 |  |
Guest Book Entries | [ Add Entry ] |
| From ste of liverpool | 01/10/2005 |
| Email ste1972@hotmail.co.uk | |
| hello people in pain, i had spine fusion july 05 c5 c6 i had no choice it was a large prolapse putting pressure on my spinal cord and nerve root,3months later im getting headaches all the time pain seems to be getting worse, i have not had any physio how do you manage pain, my right leg seems numb and i seem to be landing with a flat foot.i also have a sore jaw .any replies would be greatly appreciated thank ste. | |
| From Elaine of Wiltshire | 27/09/2005 |
| Email elaluvspigs@myfibrosite.com | |
Hi all, sorry about my spelling in my last entry, my brain is in perminent fog mode at the mo! elaluvspigs@myfibrosite.com elaluvspigs@yahoo.com I thought l would redo my email addresses as they were joined together and you wouldn't get anywhere, feel free to email me, though l am not always on here, sometimes l go on about twice a week, its all according how l am and wether or not l can sit for long without fidgeting. all the best Elaine x | |
| From Elaine of Wiltshire | 27/09/2005 |
| Email elaluvspigs@myfibrosite.com/elaluvspigs@yahoo.com | |
| The last time l wrote anything here was 18/6/2003, l do come to the site regularily, but just to browse, this is a great site for people in all sorts of chronic pain, I have had fibromyalgia now for over 8 years and even though l went to a pain management clinic in 2003 and learnt to pace myself, which was priceless for me, l have steadly gotten worse, not being able to do things just like getting in and out of the bath or reaching up to wash my hair, reaching behind myself to do up bra's are to name just a few, but l have learnt gradually over the years with lots of patience to adapt ways of doing things. At this time in my life, the pain clinic has not bothered with me since my classes finshed in 2003, and l now have no specialist to see, l have been referred by my Gp several times in the last 18 months - 2 years, but to no avail, its like you have learned to pace and self management so you do not need us!!! My Gp was originally like 'its all in my head' but over the years he has learnt more about fibromyalgia and dare l say it not so ignorant, he also has quite a few that has been diagnosed with this disability, which l have copied and printed off many articles about Fibromyalgia for him and the surgery. I have just had the most awful year in terms of pain and unable to do things, so now he has suggested l put in for disability living allowance and a blue disability badge, as he thought 8+ years was long enough on incapicity benefit, whether l get it or not is another thing, as l had been getting industrial injury benefit until februaury of this year and they asked to assess me, they found l was 20% diabled in my shoulder (where the injury pain started) which was more than before, but they denied me payment, so l put through for an appeal, this was so called desided against me in June without me even going to see anyone, so now l am writing a letter of complaint to them as it is bad enough we have to chase everything up without having to fight for it aswell without a say in it! I sometimes feel like just giving up on them, but the money does help. although it was only £90 a month, but this l used to get around in taxis when my husband was at work so l was more independent of him, and not waiting for a lift everywhere. Well l do rattle on and my hands have now gone into cramps/spasm, so l am going to finish here, thank goodness l here you say...LOL, I hope every body keeps there chins up and l wish you all weel and hopefully a painfree day today {{{{{{{{{{{{{{Hugs}}}}}}}}}}}}}}}} Elaine | |
| From Anne c. uk | 25/09/2005 |
| Email n/a | |
| I have chronic nerve pain and allodynia, and also mechanical problems due to nerve damage & some muscle paralysis, all in my right upper half. Just discovered this website and am reminded of the coping strategies that are so important to have a happy life alongside pain. Also the forum looks very active and helpful. Wish I could sit for longer to read more but I have been here too long - must remember my pacing! Shall return another time. | |
| From M Goodwin of Australia | 11/09/2005 |
| Email bgoodwin@nelsonbay.com | |
| I have had chronic pelvic pain & extremely unstable sacral illiac joints for 6 yrs since the birth of my son. I have partially ruptured ligaments and a detached pelvic floor muscle. I take numerous pain medications. I am considering sacral illiac fusion has anyone had this done. All physio, cortisone, even botox etc has not helped. Thanks Michelle | |
| From Sharon of USA | 09/09/2005 |
| Email SharB@NETSCAPE.COM | |
| Hey Everybody! I used to go on this site daily, and then, we moved and I didn't have a computer, and it's been over a year now but boy am I glad to be "hooked up" again! It's so hard to be so physically restricted,and feel so isolated from the world at times!!!!!This site, in particular, is a godsend. I have RSD,I'm 42 and am (tryingto) raising 2 boys on my own. Would love to hear from anyone elsein similar circumstaces. Or,, any words of encouragement, for that matter. . May your pain be reduced to a mere irritating discomfort. Sharon | |
| From SUSAN WALKER of MERSEYSIDE | 26/08/2005 |
| Email Ed-walker@sumarpubl.fsnet.co.uk | |
| JUST JOINED AND DESPERATE TO KNOW IF ANYONE ELSE IS HAVING CONTINUAL NECK MUSCLE SPASMS AND HOW THEY COPE. | |
| From Jettie of USA in Eastern Kentucky | 22/08/2005 |
| Email jetta356@bellsouth.net | |
| I am 61 years old and I am so glad to be a member of Pain Suppor Club. It is the best sight that I know of that has the support and understanding that a person needs when they are in so much pain. I have four bulging disks in my neck with spurs and two or maybe more in my lower back with spurs. I am in a lot of pain most of the time. More so this summer . the heat and humidity hasn't helped either. I would like to hear from any one that can understand what it is like to live with a permanant back problem. May you all have more good days than bad ones.And keep hoping for better days ahead. Jettie | |
| From Geraldine of UK | 13/08/2005 |
| Email Geraldinebirt@aol.com | |
| I am really pleased to have found this site with all the information and support it offers. I am relatively new to all this have suffered with severe nerve end pain in my upper back running under and sometimes down by arm with pins and needles in my fingers. This all started in Feb 2005 and I thought six months of this horrible pain was a long time! It makes me realise how long other people have had to suffer. I too have gone from an active life running a business with by husband to being virtually disabled for two or three weeks out of every month. I have tried all the pain-killing drugs out there and have recently paid a fortune for an MRI scan to check my spine, which was O.K. It is really frustrating not been able to get any diagnosis as to what is causing this pain, but at least I can keeping reading the comments in your discussion forum for ideas & support. | |
| From PAUL of LONDON | 06/08/2005 |
| Email rosspd@blueyonder.co.uk | |
| I,ve had a microdiscectomy (28/7)in Royal Free Hospital..Only 10 days ago I was in such chronic pain that even Morphine/valium prescriptions had virtually no effect. I was always very sceptical about spinal surgery and would never have considered it as an option, but having had a MRI scan and seeing what was causing the nerve compression made me change my mind. I,d been suffering since Oct 04 with months off work and feeling that my life was unbearable. I went under the Knife... I have to say I went in with an extremely positive frame of mind (which i feel is absolutely essential) and even though I,m still in a little pain ,I can stand up / sit down/sleep /walk a few hundred metres,which all were impossible only two weeks ago.Faith is essential as is TLC AND I would like to thank my beloved wife and family ,the Royal Free and all its Staff for giving me the above..... Perhaps the most crucial element of dealing with back injury is careful exercise , good pain management and positivity . I will start swimming again asap which is very good exercise (not breast stroke)and hope that fellow sufferers can look beyond their current suffering to better days ahead. Reading The Alchemist by Paulo Coelho was a great inspiration to me Life aint easy,but It can and will get better If your heart is set on it Paul | |
| From agf,uk | 26/07/2005 |
| Email n/a | |
| i have many a better nights sleep,due to the advice and help recieved on this site.its really great to be able to get help and advice from people who are in a simular condition to yours,or maing you aware of some of the pitfalls of certain meds...........................fab. agf,uk. | |
| From Nancy of USA San Antonio, TX | 25/07/2005 |
| Email davnan@stic.net | |
| I need some one to share moral suport with. I get so down and sometimes I don't know how to pull my self out; I am on an antidepressant. I am married so not looking for anything other than friendship. I also have alot of support to gave. | |
| From dave nelson of carlisle uk | 24/07/2005 |
| Email djpnelson@gmail.com | |
| what a site! as soon as i came accross it i had to join up.... i have fibromyalgia and chronic back pain. seems i'm in rather a large club! | |
| From Doreen McCartney of south fylde lancs. uk | 06/07/2005 |
| Email sophia1933@aol.com | |
| would just like to say, Jans books are exellent, I have the one on The Feel Good Factor, also the c d to go with it, so you will be getting a bargain with the one`s she has on offer. This site is just great and i feel we have a lot to thank Jan for and all the work she must put into it. I have made a number of friends, and learn`t a lot from all of you. I am a widow living alone. my problems are from back and neck and 2 brain tumours, the latter causing me much pain, and other symptoms, epilepsy for one, also balance problems. I always try to laugh at myself, makes other people feel better. and after all " laughter is the best medicine" keep smiling Doreen | |
| From carol from uk of yorkshire leeds | 29/06/2005 |
| Email carol.oneile@btinternet,com | |
| i take morphine and other pain killers for my nerve pain i have a genetic condition called neurofibmrotious and i get tumors on the nerve ends this causes nerve damage. ialso have a dry mouth and get fed up of drinking water as iam in a wheelchair it is difficult for me to get to the loo so i have the sprays as well they help me a lot . | |
| From Anne of USA | 20/06/2005 |
| Email Usercleo974@aol.com | |
| I just joined this group. I'm ever so grateful there is this for our type of people afflited with CHRONIC PAIN. If anyone would wish to correspond with me, I would be delighted to. We do so need the support! My email is Usercleo974@aol.com. I'm 48 yrs. old. I wish you all hugs!! | |
| From margaret barrasin of newquay cornwall | 12/06/2005 |
| Email margie7570@fsmail.net | |
| hi all, i have recently been diagnosed with fibromyalgia and experience severe pain on a daily basis i have a tens machine with four pads and it does relieve the pain. i obtained my machine through the hospital pain clinic. my gp however is not being helpful with the other symptoms i have and it is very distressing which aggravates fibromyalgia. it would be great too hear from anyone with any advice or ideas on handling the gp, anyway thanks for reading this bye4now margaret | |
| From dave mass of lincoln | 25/05/2005 |
| Email dmass2@ntlworld.com | |
i have been reading most of you comments and your problems beleave me i know what you are all going through . one or two of you ask about the tens mathine i have one and thay are ok if you get the right one you want the one with two cannales there is a site you can go to . its. www.physiosupplies.com look at .it the no. of it is., TS1211 ./, i am thiking of sending for it , all the best dave lincoln | |
| From sally of East Sussex | 15/05/2005 |
| Email 1funnyfarm@tiscali.co.uk | |
| just found your great site and feel so much better knowing that i am not alone. I have extreme back problems which also affect hips, legs and arms. I have had a fusion to the lower spine, but not helpful. Regular physio, which helps with Bowen technique. On very strong meds all the time and am frustated because i used to be so active but can't manage much any more making me feel very depressed. hugs to all sally x | |
| From Patricia of manchester, UK | 08/05/2005 |
| Email tallytaylan@ntlworld.com | |
| Hi, I have severe spinal stenosis and am considering a laminectomy, I would be very grateful to hear from anyone who has had this op and what your experiences of it are. Another treatment I would love to hear about is intrathecal drug delivery. Hope someone can help me as my pain is now at a point where I have no quality of life. Thanks! | |
| From Melanie of Southampton | 05/05/2005 |
| Email Baronm1@uk.ibm.com | |
| Hi, suffer from what originally was lower back pain and problems, however in the last year the pain has moved from my back to my legs from siatica. Doctor has said I need to manage the pain because the only other choice would be an operation which I dont want and indeed the consultant would be reluctant to do. A friend told me that there is a pain clinic in Bath, Somerset - does anyone know what its called and how I get on to this 3 week pain management course. Thanks | |
| From john of london | 28/04/2005 |
| Email john@eastcombe.e7even.com | |
| hi I found your site this morning, I did not realise that there are so many people like me suffering acute pain all the time I have diabetic neuropathy that effects my feet and legs, at times the pain is so severe that it almost makes me cry,I have been prescribed most of the usual drugs ,co codamol,gabapentin,amitriptiline,tramadol etc none of these work my Gp says it will heal once my blood sugar is controlled,he has said the same thing for four years,I am sure he thinks the pain is in my mind all the best john | |
| From Debbie | 27/04/2005 |
| Email n/a | |
| Just to update tried and tested pain remedies that have all been used extensively in my household at a variety of times - kombucha tea - see their uk website, worth a try, pernaton gel - has green lipped mussel extract- new on market but definately worth the price tag (ouch £8) steroid injections straight into joints - not for the faint hearted, especially not if the area is the top of the neck but one or two jags can keep my hip joints relatively pain free for over a year, can be lengthy building up to that though and does attract weight to settle in that specific area, sorry girls! Dead Sea salts for the bath, more of a soother than pain relief but comforting none the less, tens machine has been a god send, particularly good for spasm and recently from nerve pain down legs from back injury, if your thinking of buying one of these, make sure it has a good variety of settings.Lots of supportive friends and family and no guilt trips about what you cant do anymore is essential to surviving long term pain, I know the legislation but cannabis is still a hands down winner, cooked into a meal. Its expensive but a private osteopath can repair or at least reduce damage to injuries, uncomfortable but definately worth it.Try to be careful with the ibuprofen, it will rot your stomach lining.you really dont want an ulcer on top of everything else. I find make hay when the sun shines is a good guide for pain versus activity balance. | |
| From claire of north east | 20/04/2005 |
| Email claire.cornforth2@ntlworld.com | |
| Hiyah everyone, my name is claire and im 37 years old. Had a stupid accident on a bouncy castle, believe it or not and have been in agony ever since. Been diagnosed with DDD and have 5 discs that have gone awol and are trapping a nerve in my back. Sorry not to sound to medical about it all, but I have to try and make light of it or id end up dead I think. Havent worked since last year and really miss it. I have 3 wonderful children and a brilliant husband but I hate the way I am and the things I can no longer do. I love reading everyone elses problems as it makes life seem a bit easier. Just wish I could get more advice other than have an operation or just suffer, Only take tramadol and ibuprofen which does nothing, any advice on pain relief would be great. Has anyone tried a tens machine, thinking of buying one. Bought one of those mirrofoam beds, load of rubbish and make it more difficult to get out of bed, but it makes my husband smile watching me struggle. Would love to hear from anyone with similiar problems and life style. How brave you all are !!! | |
| From debbie of Fife | 13/04/2005 |
| Email n/a | |
| A message for Elsa, has your doctor offered anything at all? like nerve blocks or steroid injections, i think its appalling how doctors so clinically write people off when they are in pain and losing quality of life. Is changing your doctor an option? Really hope you get the opportunity to at least try some other pain control methods. | |
| From Elsa of Norfolk | 07/04/2005 |
| Email hayesdjae@aol.com | |
| I have juust found this site which makes very interesting reading. I am 74 years of age and am in constant pain following a spinal decrompresson operation and the freeing off of trapped nerves. I am at present on 170mg of morphine with little result and I am told that there is nothing which can be done. I spend a lot of time sleeping and watching TV. My husband does the cooking and cleaning. Love to hear from a similar case. | |
| From debbie of Fife | 06/04/2005 |
| Email debbie_704@fsmail.net | |
| Hi, have been looking for some information and advice about my most recent episode of pain. I had a compression injury three years ago when I fell off a horse and fractured my coxyx at the same time. Usually my back plays up if I do too much, like hoovering or making the bed, then it settles in about three weeks. About a month ago I woke up and there was the pain, within two days I couldnt walk and the painkillers didnt touch it. Desperate and unable to cope someone offered me a smoke of cannabis, tried it, two or three puffs of it, not a whole smoke, and damn what a difference! cant they hurry up and make a pain relieving product out of this stuff! Obviously cant do that everyday so have paid to see an osteopath, my GP has no options for me, painkillers and exercise, Im not even sure they know what theyre dealing with as it was osteopath who diagnosed damage to L456 and sacral illiac joint. Does anyone out there get the same crap form GPs and any ideas of coping strategies, am a busy mum, worker and student! Life just isnt the same anymore and its driving me nuts. | |
| From charlotte collins of dorchester | 27/03/2005 |
| Email charliejoycollins@gmail.com | |
| hi, im new to this thing to!im 17 and after a bad case of glandular fever, two years ago now, it has left me in a lot of pain all over the body.i manageged to pass my GCSE's but because the pain got so bad i had to give up on the A levels.now i am stuck, till the doctors can really find out what is wrong with me i have to keep taking the pain killers. its just not fair!thats my view.so to people who are my age and who suffer i understand how it feels.hang in there and keeep goin i know it may not get much better but there are way of coping with things.wishing everyone out there the best! | |
| From nigel of kent | 19/03/2005 |
| Email nigelalf@hotmail.com | |
| Hi Jan , thought i should update you all on my progress.if you remember in feb 2004 i fell over at work and got a bad prolapsed disk for my trouble, i have been off work from then on.Work have been very good and have kept me on half pay,plus i have been on Bupa medical cover so i have got some good therapy. Since December ,when i had a relapse and much tears, i have restarted doing my taichi and now do it 5 times a week !! I can move almost normally now but i still have to be aware of some small limits in what i can do.but my message to all is DONT give up , you will find a way to sort your self out , and remember that on this site there are lots of friends to contact in the down times.i am due to loose my job in a couple of months but at least i can move again ..so a new start doing something else. For me movement and meditation to de-stress myself was the key. Go and find your key.....Nigel | |
| From Diana of Lancashire | 18/02/2005 |
| Email n/a | |
| I had to put in another entry to thank Jan and everyone who posts on here for this wonderful, helpful site. After being housebound for a year and bedridden for 6 months because of trapped nerves, I finally found a wonderful treatment that jelped me tremendously; Bowen therapy. I still need 3 hourly very strong pain medication but am back on my feet which is wonderful. I can't stay upright very long but people on here gave me advice on wheelchairs and possible treatments. The pain hasn't gone away but it is now bearable and last week I actually judged a dog show. Something I thought I would never do again and I even managed to drive the car. Jan, you and the site members have saved my sanity more than once. | |
| From Tony of South Yorkshire | 04/02/2005 |
| Email tapx2@tiscali.co.uk | |
| Hello! I am new to this pain scene. My arthritis suddenly became unbearable about four months ago. I have it in my feet, lower back, neck, shoulders and hands. I am waiting for an operation on my right shoulder which will certainly help but still leaves everything else hurting. I feel as if my life has suddenly stopped! I canhardly do anything for myself. I can't walk far and can no longer drive, so i am a prisoner in my house. But the worst thing of all is - I can no longer paint! I have been painting all my life -since I was four years old and it is very important to me. I cannot sit at my easel for more than a few minutes and it is too painful holding the brushes. All I do now is sit watching TV all day long. Until all this happened I never realised just how awful arthritis can be. | |
| From Eleanor Pammer of Austria | 03/02/2005 |
| Email eleanor.pammer@newsclub.at | |
| Thanks for an absolutely superb site. To everyone out therein pain: I WISH YOU COURAGE TO ENDURE THAT WHICH ALSO HURTS YOU. Please feel free to mail me - will answer a.s.a.p. Eleanor | |
| From Jim Taylor of Cornwall | 26/01/2005 |
| Email jimtaylor@btbroardband.com | |
| I would just like to thank everyone concerned with this site I have been crippled up with a slipped disc for 12 years all the so called experts I have seen said it would leave me a head on a bed if they operated on me and seperated the trapped nerves.It has cost me a wife twin boys and a very good business. I was hooked on morphine a bottle of whiskey a day plus chain smoking dope just to help ease the pain.Through a freak accident the trapped nerves have become free and I have started trying to walk again,because the extreme pain is still there am wondering,if any one else has been through a simalar situation. | |
| From Julie . of lincs. | 23/12/2004 |
| Email juliemillie@aol.com | |
| Hi to you all, have just found this site this week and what a fantastic site this is. I did,nt know there was so much info about the varying degrees of pain we all suffer from every day. I have fibromyalgia and have had it for over 20 years but was only officially diagnosed last October. I also suffer from chronic fatigue which is associalted with fms. my days are spent indoors mostly as i am unable to go out much to to unrelenting pain. finding this site if brilliant as this is a very lonely illness. this pc is my lifeline to the outside world so good on you Jan for starting up this site. I've also been practising the breathing techniques as well and they are most helpful. once again its great to meet fellow pain sufferes who understand each other. take care all. juliex | |
| From TONY FARROW of Lincs | 12/12/2004 |
| Email info@thetruthguide.com | |
| Hello all, i have been off work for nearly 2 years now. This is due to a neck operation on my discs in which 3 had collapsed.I have been on several drugs such as lyrica,gaberpentin,fentanol patches,ketterming injections and many many others. I cant really sleep due to pain,and with the new drug Lyrica ! which i have been on for 4 months but no help at all. In all I would have thought on differant drugs 15 / 20. Facet injections, and so on. so Im open to any new ideas people may have or people they have seen to help in this area.Not so much as the pain management but the start of the problem in the Nurological area. The operation was sucessful but the fall out of pain has been the worst Problem I have had in my life. All the best to you all. | |
| From Tracy of Buckinghamshire | 12/12/2004 |
| Email tracyjune1968@msn.com | |
| Hi my name is Tracy, I am 36 yrs old and just been diagnosed with Interstitial Cystitis. I have chronic need to urinate, in alot of pain around bladder area, pelvic region. Do not sleep very well. Anyone out there with the same condition I would really like to hear from you. Also like to hear from anyone who can give advice on pain relief in general. Tracy | |
| From Chris of Finland | 10/12/2004 |
| Email sadepisara80@hotmail.com | |
| Greetings! Thought that I'd introduce myself, as I just joined the Pain Support Contact Club. This site seems really wonderful - haven't gone it entirely through yet, but I will! I've been suffering from knee pain (Plica Syndrome and Chondromalacia Patellae) for almos 10 years and would love to hear from others dealing with the same issues. Sometimes I feel like pain is my master and not the other way round. Hopefully finding painpals will help with that. Anyone feel free to share thoughts via email! :) | |
| From Veronica of Bromley | 30/11/2004 |
| Email n/a | |
| Thanks for a wonderful website. I saw it just a few days ago - so comforting to know there are a so many of you out there who are also suffering constant pain - and most are far worse than mine so perhap I have no right to complain! I was involved in a car crash in Uganda nearly three years ago.My back was injured - nerve root was crushed; I've had surgery, physio etc but I have not worked since then (Health Visiting) and had to give up Scouting in which I was very involved at the time. There are times that it seem that life has just taken a back seat. However I have a wonderful husband and two brilliant sons who help to keep me thinking positive. | |
| From jacqueline donaldson of scotland | 15/11/2004 |
| Email jrdonline@hotmail.com | |
| just a quick line to let you know how much i enjoy the website, at the moment i am not in a good place just found out that the DSS have decided that i have made a full recovery only no-one told me!! anyway hope everyone else is getting on better than me and life is treating them better. | |
| From Sianna of Australia | 10/11/2004 |
| Email siannaslife@optusnet.com.au | |
| I have been in terrible pain since being admitted to hospital with a severe infection. Since my hospital stay I have come home with what doctors call trapped nerves in my feet. it is very painful..I can't walk and I don't go out. My doctor is starting me on a drug called epilim. I will let you all know how I go. I also have severe back pain. | |
| From Jan of Huddersfield | 24/10/2004 |
| Email n/a | |
| Hi Jan, I came across your website earlier this evening and, I can't tear myself away from it! There is so much help, support, and advice on it. I've been looking for something like this for years. I'd to say a very big "thank you" to you for being there, and to anyone else who's reading this, "keep your chin up, there ARE other people out there who understand how you feel" Best Wishes, Jan | |
| From dawn beaven of wallington surrey | 05/10/2004 |
| Email dawn_beaven@hotmail.com | |
| Hi Jan just found your site its great got recommend from my Pain Clinic in surrey. I have Lupus and Crohns and silicone poisoning so am very familiar with pain. I also run www.siliconesurvivors.co.uk many of myladies have immense pain with all their illnesses I will refer them to your site. Great to find you Love Dawn Beaven A Silicone Survivor | |
| From Sharon of Norfolk | 30/09/2004 |
| Email sharon1612@aol.com | |
| I have just returned from seeing my consultant about the results of my MRI scan of my neck. The results were not too good. He said I could keep on pain relief for the rest of my life but my neck is very fragile. However he suggests I have an op to remove the disc and to go home and discuss it with my husband & to tell him my decission in 3 months. How can I do this without knowing everything about the op. I have been given no leaflets or anything to go on, can anyone help. Thanks | |
| From Diana of Lancashire | 22/09/2004 |
| Email n/a | |
| Jan, this site is a lifesaver. I haven't been able to leave the ouse since Feb and have been bedridden since April with pain from a trapped ilioingional nerve. It makes a muscle in my abdomen twitch constantly (like having something alive inside you) and the pain over my hip and pelvis is horrendous. I've had no treatment and face months more of waiting for a pain consultant. I was terribly depressed till I read some of the posts on here and now realise I'm not alone and I'm a lot better off than some pooe people. Kind of puts things into perspective. I can still shop online, order by phone, can get people to come to me instead of me to them. I catually got my hair cut last week for the first time in 11 months. I've come to the concusion that GPs know nothing about pain relief and the NHS is worse than useless. they are not going to help me so I have to help myself. To others out here, NEVER stop fighting however bad it seems. I've been to the bottom and I'm coming back. Slowly I admit but this site has helped. | |
| From Mrs P E Smith of Milton Keynes | 15/09/2004 |
| Email pauline.smith29@btinternet.com | |
| I have suffered with chronic back pain since i was young,but the last twelve and a half years i have been more or less house bound.I have a wonderfull husband and sister who keep me going.also my two dogs.My pain is terrible no matter what i do.I have to lay down because i cant sit for long standing is the same.The nerve in my back and legs is a trapped siatica cant spell ha ha I am also twisted a bit aswell which makes things worse.I have been to a pain management programe it was wonderfull that at last there was the sight of some relieve.It did me good to be with others who were in the same boat as me.Like you say you think you are on your own in this but it's nice to know you are not.It was by chance i came over this sight as i am in a village and there isnt anyone of my age that i could talk to so i have been on my own with this for all this time.At first when this happened to me for two years i was dieing inwardly and i couldnt see no way out and then the programe came along and changed my life for the good.So i hope some one will answer my email as like i say i havent had anyone that has chronic pain to diccus it with ibetter go now as i could right a book.Regards to all Pauline | |
| From Joyce Davis of St Just Penzance Cornwall | 22/08/2004 |
| Email JDBosorne@aol.com | |
| Has anyone been treated by spinal column stimulation? My consultant is considering this to relive the pain I have from a 9 year old hip replacement . I would appreciate any information especially about possible complications. I have been reading the letters on this site and am amazed at the number of people who suffer from chronic pain. I am not alone!! I have had both hip and a knee replacements and would be happy to be contacted by anyone who is facing this operation. | |
| From carol newcombe of swindon wilts u.k. | 05/08/2004 |
| Email carol_newcombe@yahoo.com | |
| I have had a back problem since I was 17, I am now 57. The lower facet joints lock or misplace, (the specialists cant seem to make their mind what the exact problem is. My specialist just said , dont ask me to operate because I wouldnt know where to begin. Find it very hard to cope with. My facet joints lock on a regular basis and I spend a lot of time on the floor or in bed. Try to start moving as soon as possible, I cant sit stand or lay down for long, and travelling is out of the question. It is very difficult when you have an active mind, but your body restricts you from doing things. Have just started yet another exercise programme, in the hope that it will strengthen the back and stomach muscles. Unless you suffer constant chronic pain people just do not realise what it is like. Best Wishes from Carol. | |
| From Nelson J. Trahan of New Iberia ,La 70560 | 30/07/2004 |
| Email lagator3@hotmail.com | |
| well i just had my second set of shots in my lower back the first ones didnt do much good so lets hope the second ones will | |
| From Nelson J. Trhan of New Iberia,LA | 16/07/2004 |
| Email lagator3@hotmail.com | |
| i would like to say hi first. well i been having lower back pain for 2 plus years now and it still hurts. i did chiropractic care for it and noting 21 visits.did xrays with him and all clear.but pain still was there.went to my doctor he took exrays and no arthritis.he sent me to a physical theraeist doctor did rehab for over a month and still pain was still there with no relive and the doctor gave me pain medicine but it didnt work so i ask for something stronger she did and it didnt work eather so i asked her for some laratabs but she didnt want to give them to me so im still in a lot off pain so she sent me do a mri on my thorasic spine and it was fine so i went see orthopedic doctor and he sent me do a bone scan and it was fine no arthritis so i did a mri on my lumbar spine and it was fine as well so now they want me to do a spinal injctions in my facet joints i was just wandering if anyone has had this problem and if they did the injctions thanks | |
| From Linda. of N Lancs. UK | 03/07/2004 |
| Email peddersrus@hotmail.com | |
Hi everyone, thought I would introduce myself to you all on this wonderfull site. First can I say thank you to Jan for setting it up, I, and I'm sure many before me am indebted to her wisdom. I am Linda, 49 (thought I'd get in quick before my next birthday!) I have a nursing and customer service background, but have not been in work for 3 years. After many years (12 ish) of muscle/joint pain, with bouts of pure exhaustion, I was told I had Ankylosing Spondilitis, some 8 ish years ago. There was no cure, I had to get on with it, this I was happy to do, someone actually believed I was having problems. I read up a bit about the condition, there wasn't much then, but I was working full time and I could adapt things to my needs.My daughters nicknamed me PINGU 10 years ago, walking was becoming problematic. 4 years ago my husband went in for bypass, I borrowed a wheelchair for myself, I didn't know how far it was from the car park to the ward, the ward presumed it was his, HE, after all, was the one with Chronic Heart Disease and Emphasema, but he could walk further than me. After the successfull 4 way bypass he has aquired Chronic Fatigue Syndrome and Diabetes, he doesn't want any more to do with Doctors, as long as he gets his prescription, he just plods on in his own merry way. Back to moi, my AS is impinging more and more on my life, the spine and neck are now starting to go rigid, Sacro Illiac joint doing the same, Rib cage has enlarged by 4 inches. Mobility is spiralling downhill, now use a scooter to get out of the house, I know I'm not getting the housework done, I feel guilty. The family have said to bring the bedroom back downstairs, husband needed it down prior to bypass, but I'm too bullheaded to agree just for me, after all, the excersise is good, isn't it ? After 6 emergency addmissions to hospital in the last 2 years for heart and lung problems, which, during follow up, when they find out I have AS they stop and discharge me back to my GP, I thought it was time to discover more about my condition. (Am I contagious?) I have, and am still learning, I'm not contagious, just Arthritic!, but one thing I have realised is that Arthritis is a many faceted thing, how a condition affects a person is very individual and personal. Sorry, I've rambled on a bit. Its good to get it off your chest they say, hmm feel better for that. I would like to comunicate with others, these 4 walls get a bit tiresome at times, I like to think I have an upbeat attitude most of the time, positive thinking gets you a long way My interests include, our rescue dogs, going abroad on holiday, quizes and puzzles, count-down, armchair archeology, documentaries, people watching, learning (anything). I will answer all E-mails, there must be somone out there just as crazy as me, 21 coming on 50, (its nice/essential to escape realities at times) It's one of my coping stratergies anyway. Hope you all find your escape route today. Sending you my love Linda | |
| From Gladys Glascoe of Canterbury | 25/06/2004 |
| Email philipglascoe@aol.com | |
| Last August I had a very bad experience with Connex who, having promised disability help, let me down and abandoned me at the station in the dirty guard's van in which I had travelled. I might have been carried back into Kent or shunted into a siding and lost but that there were two friends meeting me - unknown to Connex - who led to my discovery. As a result of this shocking experience I suffered a min-stroke and lasting after-effects including sleeplessness. For hours in the night I would lie recalling every mistake , every error, every wrong thing, I had ever done. Waiting for an epidural for my back I confided this to my doctor who deemed Connex atrocious and said,"Don't think about the negative things. Think about the good you have done!" At first, nothing came to mind, then I remembered that when our nephew was three his mother was dieing of cancer. Phoning his grandfather I asked where the boy was and was told,"At his cousins', until it is all over." I said,"You must get him back to say goodbye, or it will affect his whole life." That was done and shortly afterwards, when he was playing on his own, his grandmother heard him say,"My Mummy went away - she didn't want to go." So that small step of mine may have helped to relieve the child of a load of guilt, felt by many children whose parents disappear without explanation. Taht recollection was the first step in recovery not yet completed - but heartening. It may be of interest that transport is specifically excluded from the Disability Rights legislation. Efforst, so far unsuccessful, are being made to have it included. | |
| From Margaret of New Zealand | 19/06/2004 |
| Email mahill@clear.net.nz | |
| I would love to thank you for this wonderful site.I no longer feel that I am alone with pain.If I am having a bad night I come on to the site and know I am not alone. This is so impotant for me as I have no family and the few friends I do have I cannot ring in the middle of the night.So something like this is a bridge fotr me to cross and meet others not with the same disease but the same pain. Thank you for your loving insight. | |
| From Caroline of Buckinghamshire, UK | 04/06/2004 |
| Email martiansnoopy@aol.com | |
Hi I am 24 years old and have been suffering from chronic FACIAL PAIN for over 3 years now. I do not live I just exist!!! There is no painkillers to relieve the pain. I can`t take morphine because it makes me sick. The pain is so constant and so strong. I am in bed whole day crying and screaming because of the pain. Doctors just do not have a clue what I have to go through. One of the doctors even told me that it was just in my mind. I JUST COULD NOT BELIEVE HOW ONE CAN EVEN SAY THAT!!!!!! I haven`t had one pain free day in 3 years. I suffer like an animal. I wish there was some magic pill just to reduce my pain a bit, but I am asking too much. I would really appreciate to talk to someone with the same problem. I mean to someone who has tried everything and nothing worked for him/her. Thanks Caroline | |
| From Judy Rathel of Colquitt Ga USA | 29/05/2004 |
| Email Peahull@aol.com | |
| Hi, I have been suffering from chronic backpain for approx 8 years now--I worked as a nurse and no doubt tugging and pulling on patients finally took its toll on me--I had a back fusion in Dec of 2003 and i am not much better-Still have to take pain medication and my activities are very limited--I take Lortab and Darvocet--Soma occas-But there is not a day of being pain free--If anyone out there can recommend anything that might help (that i have not already tried) Oxycontin is OUT- The doctors i use would not EVEN give me that and i dont think i would want it--I am also allergic to Demerol-- I am no longer working and have applied for disability benefits ; however, was denied , but appealing--It is very hard on my husband--I have always worked and now i have to depend on him for money--Which he does not make a good salary--I would love hearing from anyone-It makes me feel better speaking with someone who understands the pain ---People who dont- do not understand at all--Please feel free to email me at any time Sincerely, Judy Rathel | |
| From Christine of Teesside | 18/05/2004 |
| Email fibrosuffereruk@yahoo.co.uk | |
| I have sufferered with widespread pain for most of my life. I was diagnosed with fibromyalgia 3 years ago. My mobility is getting very bad and somedays I can hardly walk due to the pain in my legs, knees, back and hips. I am waiting to go to a Pain Clinic. Can anybody tell me what help they offer. I take Co-proxamol and Gabapentin. | |
| From Sharon of Michigan | 17/05/2004 |
| Email magicspot62@comcast.net | |
| I love this site! It has been so helpful to me...especially on those days when it seems like no one understands the struggle we have just to get through each day! I am wondering if anyone has had any experience being evaluated at The Mayo Clinic, Johns Hopkins, or The Cleaveland Clinic? I would be very interested to hear about other pain patients experiences.... God Bless each of you.....Sharon | |
| From Dave of Gosport | 11/05/2004 |
| Email bantam28@hotmail.com | |
| BRILLIANT i came across this website whilst searching for an alternative to drug pain relief. I have been in a lot of pain with my back for the past 5 years, however as i am in the Army, the majority of my colleagues are 'fit and healthy' therefore i didnt have anyone to talk to who would understand about the pain i am in. My back problem is a result of carrying too much weight in bergens (rucksacks) and slipping on the assault course, but unfortunately, as in most jobs i guess, people think you are exagerrating about the amount of pain you are in, as i still wear my uniform and havent got a tatto on my forehead saying 'i have got a bad back' people just think i am OK and a normal soldier, which is extremely frustrating. Its great to know (in the nicest possible way) that there are people out there who are in the same position as me and who understand the pain i am in. i look forward to having various discussions and have now saved painsupport as 1 of my favourites. Thanks very much Jan this site has enabled me to see i am not alone Thanks again Dave PS anyone feel free to email me at my address. | |
| From jOANNA of Shropshire UK | 30/04/2004 |
| Email virgogal1967@hotmail.com | |
| Hi im jo a 36 year old mother of 2 who has suffered with gynea pain for 10 years till last year when after my 4th operation i was finally pain free....or so i thought !! I have now been diagnosed with oestoarthritis of the knees and the outlook is not good. i am facing early joint replacement due to the spped that the condition is wearing my joints away.I pain and stiffness is terrible and i dont know how to cope after so long of being in pain | |
| From Michael RedTail Wolf of Georgia | 21/04/2004 |
| Email redtailwolf@cox.net | |
| I have been suffwering with discs at T-9 T-10, some Docs say it''s higher T-5-T6. When asked .I get "it's hard to see these MRI's in this areas" I was told the surgery would lay me uop for about 18 months, removal of a rib, intensive care and a 50% chance of pain reduction. I have radicular pain in the chest wall, feels like a heart attack. Docs says that is normal and is the closedt thing to a major cardiac event known. I have has 7 spinal surgeries 4 crevical fusions and 3 lumbar fusons.. I am interestd in new developments in tis area. If any one out there has info on this surgery that has bette odds of pain relief, slowing down progression of urinary and bowel problems. I was readt to go but the odds scared me and I opted for a REAL pain clinic that uses opiates to relieve pain and have been doing better. I post this for information. The last info I had was lazer surgery that was les invasive and was advised by5 Docs to avoid it. So I live on pain meds and wait. PLEASE if you have information that might help me contact me at redtailwolf@cox.net . I am tired of the meds, tired of the tests, tired of being tired and the tenson s causes in my family life. I am 45 and have been dealing with spinal surgeries for 20 years due to a diving accident. PLEASE ANY info is appreciated. God Bless Michael | |
| From Mary D of Denver,CO USA | 17/04/2004 |
| Email diggersmrs@hotmail.com | |
| I feel so fortunate to have found this site (quite by accident). Your tips and strategies for living with chronic pain are exactly what I needed to find!! I too am tired of being disbelieved by others at how severe the pain can be sometimes. I find people generally to look for the proof on the outside, and the cause of pain is not always so simple to see. I suffer RSD/CRPS from frostbite to my foot after bunion surgery. I had sympathetic blocks x2, which did nothing to help the pain, they just temporarily restored blood flow and warmth back into my foot. I then had surgery in Jan.04 to trial the spinal cord stimulator. I had trouble with my pulse ox after that first surgery...and subsequently was diagnosed with emphysema, am now on oxygen 24/7 as well. The permanent SCS receiver was implanted at the end of Jan.04 and by the first week of February...my body was overwhelmed from all the ?surgery, pain, medications,etc..and it just began to "shut down" on me completely. I ended up in the hospital for 3 days and convalesced at my parents home for two wks afterwards. My life has changed completely in every aspect. But I refuse to quit. Thank you for the wonderful suggestions on this website, even if it does nothing to control my pain...I am positive it will, (at the very least), help to heal my mind and spirit. And alot of the time...the pain of a depressed soul, can take a body to the very end of their ropes. My sincerest hopes to all on this site to find peace and pain free days...above all, to find comfort. | |
| From Lisa Rhodes of Southern Illinois | 14/04/2004 |
| Email llatinette@aol.com | |
| Hi to All, I'm glad I found this site. I was injured at work in 1994. I had my first surgery a Microdisectomy on L-3-4 in 1995. Went back to work for about 3 months and the back pain got worse. However the sciatica in my legs is mostly gone. Then in 1996 I had a Spinal Fusion with instrumentation and reconstruction of the left illiac crest. When they took the small peice of bone out of my left hip for the Fusion I had more pain with that after surgery. Now my left foot swells up if I am on it to long or if a weather front is coming in. My back is worse. My Work Comp was settled in 1999. Divorced there after. Chronic pain is tough on a marriage. I remarried in 2001. We moved to the Tampa Bay area of Florida. It was great on my body until the rainy season came in June. Then I was back on the sofa as if living in Illinois. My husband who delivered mail for 30 years got hit in a cross walk deliverying the Mail. He got hit by an attorney. I can laugh about this now. But, would like to hear about couples who both live in Chronic Pain. My husband is very angry and refuses to take any meds. Since he is not 55 years old he cannot collect retirement. He has been fighting the USPS for Work Comp, back pay etc. for over 2 years now. I recieve total disability but since my husband worked for the government he is not eligable. I hope someone can give me some ideas on helping him live with pain. He doesn't realize that he now has limitations. I hope that Jan and others will write me and that I can contribute in some way to this group. We moved back to Illinois a little over a year ago. Still would much rather live in Florida. Thank You, Lisa PS High humidity doesn't bother my back. | |
| From Dawn of minnesota | 09/04/2004 |
| Email dawn_s@co.kandiyohi.mn.us | |
| I am a 44 year old female who was diognost with RA at age forty. One moning I woke up and could hardly get out of bed. It quickly progressed. My doctor told me that I have the type of RA that I will probably be in a nursing home or assisted living in ten years. For the past few years, I have been on numours medications. Currently I am on Enbral and was doing okay until resently my eyes have started getitng shotting pains in them and my joints are starting to flare up again. I was in so much pain again, the type of pain were it hurts to have a sheet touching the area, so I went back to the doctor and they told me I now also have gout. So, now I am also taking medication for that. I would like to talk to someone who has been taking Enbral for a while and see what is happing to them. | |
| From BJ of USA | 07/04/2004 |
| Email bjc112876@yahoo.com | |
| Hi- I found this site tonight while I was "surfing", it is an excellent place. I have battled chronic pain since I was a young child due to a few medical problems. Being chronically ill has taught me quite a few things in life. I honestly believe that I am a better person as I am now than I would have ever been if I had grown up healthy. (my parents did a wonderful job in raising me..they are wonderful people) Adversity made me stronger, but I won't lie, over the years there have been times when I have questioned if I was strong enough. Strong enough to make it through that surgery, that test, that day...heck even that hour. I believe in faith and something greater than this life, and I believe that everything is for a reason, even when a lot of times I can't figure out what that reason is. One thing that chronic illness has proved to me is that true friends are hard to find and even harder to keep. But over the years the people I have met who were walking a similar road "battling" their bodies were the best kind of support, it proved that none of us are ever alone. I am the owner and operator of two support on-line groups for people on Yahoo.com. One is for people with chronic illness and the other for chronic pain. I had founded the group to establish a meeting place, much like this wonderful site. If anyone is interested in joining please e-mail me at BJC112876@yahoo.com I am under 30 yrs old (F) and was hoping for people in my age group to join but I would be honored if any one of you kind souls would e-mail me to join. | |
| From kay of biggin hill | 29/03/2004 |
| Email kaywescott@btopenworld.com | |
| Have had chronic fatigue since July 1997. Has got considerably better over the years thanks to yoga, relaxation, meditation and lots of useful tips on your site. Thanks with love and peace Kay | |
| From elaine clayton of stoke on trent | 23/03/2004 |
| Email john.clayton903@ntlworld.com | |
| hi i have problems in my thorasic area following an accident at work.but this causes terrible trouble around my midriff.the pain comes down my back and around the front and feels like someone is strangling my midriff.does anyone else have this problem? best wishes elaine clayton | |
| From Greg Hudson of South | 15/03/2004 |
| Email hudsonic@vodafone.net | |
| Dear Jan , joining this website has done me the world of good. I feel like I have come light years from the way I was feeling when I first joined. I have met the most amazing friend who has been my shining light & an abolute blessing to be in contact with. I am so gratefull to all of those who have taken the time to write to me.. Although every day hurts a little more, its comforting to know there really is some beautilful & caring people out there that are 100 percent genuine. Thank you once again, Take care & God Bless, Gregstar! | |
| From Graham Thomas of Oldham, north-west England | 01/03/2004 |
| Email gasvans@grahamthomas.co.uk/graham@thomas9213.fsnet | |
| Being a sufferer of chronic lower back pain following a discectomy 2 years ago, I have found this website useful to me in understanding about others who have a similar condition to me. I now have 'Nerve-root fibrosis', otherwise refferred to as 'Epidural fibrosis' and the pain is quite simply horrendous. At 30 years old, I have been retired from work on a pension which is hard to take in still after me being such a hard working man. If it wasn't for the internet, I'd be crying with boredom as UK t.v. has a lot to answer to. However, this pain support website has interesting content that you fellow sufferers of pain have conrtributed to and to which is helping me come to terms with my situation. Thanks | |
| From John of United Kingdom | 03/02/2004 |
| Email wexen98@yahoo.co.uk | |
| Finally a site which seems to carry a lot of answers which make sense. I run a Support Group for patients with LPHS (Loin Pain Haematuria Syndrome) which it is easiest to say is like having permanent Kidney Stones. All of our members internationally, have the same problems outlined in this site being on long term narcotic medications and how the medical profession see them being the greatest. If any readers wish to visit our sites, they are at http://lphsintorg.freeservers.com and http://LPHS.aimoo.com. Wishing you all well John | |
| From TONY FARROW of Lincs UK | 31/01/2004 |
| Email tony.farrow@btinternet.com | |
| I have just seen this site today and sent in a full report on my neck injury. i jad a operation on my neck for prolapsed discs,4567. I would be really interested in the way others have been handled in this area such as drugs and other means of pain help.I have seen one pain dr and now onto another. I dont hold out much hope in this area reading all reports only usa. I have seen others in this same area of problems and I too have had to retire on medical grounds. all the best to others but would like to see how others cope. | |
| From isobel. of UK | 17/01/2004 |
| Email isobel.roberts26@ntlworld.com | |
| Hi Jan and everyone, I just want to say thank you for being there. You have all helped me to keep things in pespective when I have been down and helped me back on my (unsteady) feet. Thank you Jan for creating this club. | |
| From cathy mckinney of philipsburg pa | 11/01/2004 |
| Email grammacm@hotmail.com | |
| i am 51, i have had chronic pain for the last 15 years, and i have been married 31 yrs. have 2 sons and 2 grandchildren who are 9 and 10 and they live with us. i just read a few things in this site and it helps just reading the plans to help with pain, i will use the exercise and let you look how they are working. | |
| From Pamela of NW Louisiana USA | 06/01/2004 |
| Email dpldeutsch@msn.com | |
| I hope everyone had a wonderful holiday. I am easier to contact by e-mail at my inbox. Always open for e-mail contacts.I have some serious disk problems I deal with each day. I am married, have 2 grown sons, 2 grandsons and many critters. Hugs! | |
| From kirstie of uk | 05/01/2004 |
| Email kirstier1984@aol.com | |
| the site is very well done and its a wonderful place for all those or friends and families of people who have chronic pain.got many good hints on pain management and will no doubt be posting on the forum again!!!an excellent discovery!!! | |
| From Darren Teasdale of Leeds West Yorkshire | 03/01/2004 |
| Email leadja@aol.com | |
| Hi my name is Darren, I am 33yrs old married for 13years with 3 boys ages 4,11+13.Until 3 years ago I was full of energy and very outgoing loved all sports and various activites with my children. This all changed when I had my appendix removed leaving me with servere nerve damage in my abodmen, causing chronic pain in this area and my lower back. I am currently on 100mg of MST, 8 paracetamol, 150mg of Epilim, 600mg of Gabapentin and 40ml of Ketamine daily and all this only just takes the adge off the pain. In the last 2 years the pain has got worse and is slowly getting even more worser and this now getting me down and I am getting very depressed. My wife Michelle is very supportive but my illness has caused her to become depressed also and is on medication for this, which makes me feel even worse. I am for the time been still able to work which I enjoy a great deal. I would love to get in touch with anybody else that has been left in a similar condition due to surgery, to share their expriences with them and there methods of keeping sane and managing their pain. Looking forward to some ideas. Thank You Jan for this great sight. Darren | |
| From christine of Humberside | 28/12/2003 |
| Email christine@dmmason.karoo.co.uk | |
| What a wonderful site. I was given the link from another site and am so glad I decided to try it. I have M.E. which causes muscle and joint pain, which, most of the time I can cope with, unless I overdo things. I also have a frozen shoulder, which I can't cope with. I have never had such pain in my life before and the tablets I got from my GP don't touch the pain. I have taken a great interest in the Pain Gate article, and hope to try some of the suggestions. I am at my wits end with the pain. I know just from looking at this site, that there are many worse than I am, but maybe being with others who know what I am feeling, will be a help to me. I hope so. | |
| From Catherine of Scotland | 18/11/2003 |
| Email catherine@phoenixadminservices.fsnet.co.uk | |
| I just discovered this site yesterday and it's given me lots of positive ideas on how to cope with my pain so far, it's really great. I'm 29 and suffer from endometriosis which gives me constant severe pain in my lower abdomen with referred pain in my groin and thighs, lower/mid back pain and also in my kidney area. I have tried a variety of treatments and surgery but have been told by my Consultant that I will always have this pain, it's a matter of learning to cope with it now. I attend a pain clinic and also see a counsellor to help me learn to cope which is helping. It's difficult finding people who understand what it's like to be in constant pain and how it affects your life. I can no longer work and don't have a social life and am suffering from depression but I'm taking steps to be positive. I've been reading the discussion forum and hope to post soon. | |
| From Hayley of West Yorkshire | 15/11/2003 |
| Email HayleyJonathan@stirlingtwo.freeserve.co.uk | |
| Hi My name is Hayley, I am 36Yrs I have suffered from episodes of neck and upper back pain for many years but managed the symptoms quite well. I also have a Facet Joint problem of the lower back, which triggers of sciatica with pain and numbness down the outside of my right thigh. In June 2001, I had a road traffic accident (rear bump) and suffered whiplash and also interscapluar and neck pain. I have had three courses of physio, but my symptoms did not respond to the treatment. I have also tried Acupuncture, but this was so painfull I did not go back. Since June of this year, I have been off work sick, feeling very low, due to a combination of back and neck pain and poor sleep due to the pain. All this has brought on depression. I have had a M.R.I scan, curtosey of the insurance company and I am currently waiting from the results. Once the results come through, depending on what they say, my G.P will be sending me to a pain clinic. I am currenlt taking Dihydrocodeine. I was on the Maximum amount allowed per day and found that they took away a lot of the pain, but have had to cut down on them because I was sleeping upto 12hrs+ a day. Due to cutting down on them I now can not sleep due to the pain. I am trying now to interspace these with Codeine Phospate. I also take Temazapam every other night to help me sleep. I have tried Co-codamol, Co-drydramol, Tramadol and Codeine Phos on the own, but these do not work. If any one want to E-Mail me, please feel free to do so, but don't worry if I do not get back to you immediatly as I can only spend limited amounts of time sat at the Computer, due to the pain. Thanks Hayley | |
| From Sharon Downey of Kentucky | 28/10/2003 |
| Email downey@bellsouth.net | |
| Hello everyone. I found this site while trying to see if a change in nutrition might help my problem with arthritas. I was diagnosed with it last year in one knee and some finger joint pain. About 5 weeks ago I began to have a severe attack. Both knees now and some elbow pain and one wrist. I was told it is not Rhuematoid Arthritas which I was worried about. I am trying to avoid the pain medication and injections. I have begun taking glucosamine. I have been in swimming therapy since last april after recovering from a fall at work. It helps he so much that I kept it up after recovering. Some days I go to the Clinic and think to myself that maybe I should see a Doctor instead of going to therapy. But each day I do my therapy and feel better and have avoided the Doctor, the medicine I don't want and the high medical bills. I have a feeling that there is something more I could do nutritionally but don't know what. Any suggestions. | |
| From Josie Whitney of Staffordshire | 20/10/2003 |
| Email josie_whitney@hotmail.com | |
| Hi everybody, thought I'd write a post and introduce myself. I'm 21 and have suffered from severe chronic pain for the last three years. I get very sharp, burning pain in my joints, along with numbness and loss of sensation in my limbs, and problems with moving, as well as the usual fatigue. I have to take a variety of very strong pain killers everyday in order to be able to have some basic function, though some days are better than others. It was assumed I had Multiple Sclerosis until the tests came back clear so I'm still very much in the dark as to what might be causing all this. The current suggestion is that I might have a viral infection of my nervous system but of course there is no test for this so it can't really be proven. The combination of the symptoms means I have to use a wheelchair outside of the house and can't work - pretty tough when you're only 21. Instead I'm studying for a degree at home part-time but the pain does make it difficult to concentrate. I live in my own house with my wonderful boyfriend of four years (and our cat) and have a really supportive family network who help to pick me up when I get down. I keep busy with lots of hobbies and try really hard to stay as positive and proactive as I can. I've found Jan's books a big help with this - many thanks Jan. Anyway, there's me. If anyone wants to e-mail me I'd love to hear from you. Lots of hugs and healing to you all xxx :) | |
| From Paul of Clevedon N-Somerset | 19/08/2003 |
| Email pah3148@hotmail.com | |
| Great web site jan, i've made new friends who like myself have back problems, and i hope that more people join. All the Best paul | |
| From Christine of Sheffield UK | 07/08/2003 |
| Email christy438884032@aol.com | |
| I would like to frist say Thank you to jan for responding to my emails so quick I have just look at all the people on the guest list I am just so glad I came about this web page when I did which I have to say was the middle of the night I have had pain for some time now and because I suffer with deperssion the doctors seem to think it is alway that I emailed jan about my pain i am having but I have not yet been able to tell her I also have trouble with back pain at 1 time I could not walk with the pain that I was sent to a ward which i did not need to be on I knew I was not depersseried I was findley send for an an aray which showed that I have a bone in my back to my horror I was told it wopuld get worse as i get older I am now hoping to be able to come to terms with this and the other pain I suffer with I did not know there was such a group till I came onto my computer the other morning and I did not think I would get a reply Thank you jan you have giving me some hope that i can talk this over with other people I hope that I can hear from someone but there is so manypeople juse like me when you live on your own you think it is only you and that nobody else can be going through this kind of pain I have had my eyes opened I am looking forward to been in the durport group Thank you Christine | |
| From julie messenger | 04/08/2003 |
| Email juliemessenger@hotmail.com | |
| Hello to you all. It was nice to go through at an leisurely pace your well informed and easy to follow websit. It was recommended to me and a few of my new friends by the pain management team at Lewisham Hospital. Like most people it is nice to share experiences with each other and to know that I am not alone in how I have been feeling and what I have been experiencing with the pain. I feel that this website has been and will be a great help to me in the future. | |
| From Isobel of Lancashire, England | 20/07/2003 |
| Email isobel.roberts26@ntlworld.com | |
| I found the site one day when I was srfing and I can honestly say it was one of the best things that has happened to me for a long time. I don't feel isolated anymore. I felt that I ws the only person in the world who was going through hell with pain and through this site I have met so many wonderful people who are open and generous. Many thanks Jan you are doing so much to give support and comfort to many people. Isobel | |
| From Jill Bunyan of Middlesex.UK | 05/07/2003 |
| Email JillyB@dsl.pipex.com | |
| Just wanted to say thanku for this wonderful site. Ive been in constant,often unbearable pain for the last 8 yrs with degenerative disc disease,stenosis and arthritis and have become increasingly frustrated at not being able to tell it as it really is - now i can - what a relief! | |
| From Barbara McKinzie BSW | 21/06/2003 |
| Email mckbarb01@earthlink.net | |
| NICE SITE. I AM GLAD I FOUND IT. I HAVE SEVERAL MEDICAL PROBLEMS THAT HAVE ME IN PAIN 24/7 AND IT CAN FEEL LONELY. THIS SITE SHWED ME I AM NOT ALONE AND THERE IS HELP. THANKS | |
| From Elaine of Wiltshire | 18/06/2003 |
| Email elaluvspigs@yahoo.com | |
| Hi I had a Rotor-Cuff Injury that lead on to become FiIBROMYALGIA, l have had it for 6 years and have only just been accepted into a Pain management centre (held in The Bath Mineral Hospital), if anyone having to live with pain has a chance to go to one of these clinic's l highly recommend them, not only do you meet other people who are suffering as you are but you learn how to pace yourself, this comes in the residential course or the outpatients course from which l am on, and it lead by experts who understand what you are going through. l only just found this site due to the clinic and l think l will be using it in the future, thank you Jan... we need more people like you. | |
| From Micky LeVoguer of London | 29/05/2003 |
| Email mickylevoguer | |
| Came across this site whilst researching for Reflexology exams. I was in constant and severe pain for a year (2002 )with sciatica. It was frightening and debilitating at times BUT it did go away. I found cranio-sacral therapy and accupuncture very helpful. Especially the advice of my accupuncturist that no one else can understand or measure anothers pain. I learnt to START to remove judgement from myself and others about pain - its often seen as a competition with a need to prove its reality. If you feel it, it's real for you. Having said that I did find that the solution was within me to change it (over time) Love Micky | |
| From Lynn Atkinson of Malta | 11/05/2003 |
| Email sophie@maltanet.net | |
| Hi to everyone, Been having high pain levels lately due to extreme stress in my life but reading the entries in guest book makes me feel humbled that you people with much worse problems are coping and (mostly) still smiling. That's often the key isn't -trying to retain a sense of humour even tho' there are days when we just want to curl up and hide from the world. Found this site a few months ago and believe it's the best site around. Thanks Jan and to all those who contribute and help me thru' the night. God Bless. | |
| From Jettie of Ky. U.S.A. | 26/04/2003 |
| Email jetta356@bellsouth.net | |
| Hi , My name is Jettie.I realy like this site. I visit it very often sience I found it this month in April 2003. I am looking for someone to talk to. It gets pretty lonely when you don't have a chance to get out much. I have O.A. and a bad back.with rupture discs. I like all kinds of needle work crafts. I have Two children and 4 grand children. which are all boys under 8 years old. They keep me on my toes. I love cooking and my grand sons like eating. I live with my husband and our little dog Scruffy.I have lost a lot of sleep with the pain in my back . But I find if I can go walking at least 3 or 4 times a week I feel better. I would love to hear from someone who likes to do needle craft. Or anyone that wants someone to talk to.I am here and I will listen and will write you back. Jettie | |
| From Josette of U.K. | 10/04/2003 |
| Email JosetteMo@aol.com | |
| I've been using this wonderful site for ages and it is really excellent. The people who use it are helpful and supportive and I feel we are a real community. I just wanted to say thanks to Jan for all her hard work and for the design of the site - it is so easy to use. Until last week I was accessing it using a really old and very slow computer. Now I have a new computer I appreciate how fast and "user friendly" the site is. No unecessary complex visuals (which take ages to download) or fancy graphics, just people talking to people and good advice and ideas. Thanks again to Jan and to all of the painsupport "community". Love Josette | |
| From Andy of England UK | 26/02/2003 |
| Email Andy@hi2u.org | |
| hello Jan, haven't visited your site for a little while until today after receiving your newsletter e-mail. Your new site is very good and easy to navigate that is so important when viewing a site while experiencing pain along with severe dyslexia! I don't know if you remember me I designed the site "hi2u 4 people with hidden impairments" at; www.hi2u.org this site has also been re-built. Well your site is certainly a valuable contribution to society. I will send you an e-mail soon as I have an idea and would appreciate your input. There maybe mistakes as I'm using voice recognition software. With warmest wishes, Andy | |
| From Tracy Baker of Hastings | 09/02/2003 |
| Email household@hotmail.com | |
| Hi, I have just had a spinal probe and been told that discs L4 L5 S1 have gone and L3 is on the way out! I am going back to the consulant in 4 weeks time to discuss an operation putting pins into the vertebrea and running a flexible pully system on the spine. Has anyone had this done? I have had my pain for 1 year after an accident at work and it's been very hard to cope with. By the way what a wonderful website the information provided is excellant. Cheers Tracy | |
| From margaret of manchester england | 07/01/2003 |
| Email ltlmissdynamite@aol.com | |
| i,ve just been told about this site and ithink it,s great to have other people to be able to talk about the pain we suffer i,ve suffered 4yrs it,s took all this time for some body to seriously do something about it for me anyway it,s agreat site ilove to here from anyone who would like to write to me ty god bless you all margaret | |
| From Hattie of West Midlands | 27/12/2002 |
| Email hattiedotcom@aol.com | |
| Thanks for this site. Reading it has now given me the confidence to 'badger' my GP & consultant with a bit more confidence. I am 55 and have just been told that after 3 years of awful lower back pain, that I have thoracic scoliosis. This is mainly a juvenile problem, and rare to be diagnosed in someone of my age. Is there anyone out there with the same experience as myself? I am now going to ask my GP to refer me to a Pain Clinic, as I am fed up of taking strong painkillers. I have had to give up my job, but now I have the time to swim more often, which I have been told is very good for this condition. Would love to hear from you if you have the same condition. 'bye for now. Hattie. | |
| From Patsie M. Hatley of Tustin Californis | 22/09/2002 |
| Email bookmage@pacbell.net | |
| I am so glad that i found the pain support group. Being able to talk about my pain problems with others who know what I am talking about has in itself helped in managaing my pain. Also I made some real friends in this group. All the suggestions have been very helpful, and made me realize how I could cope with pain and enjoy life again. Music, relaxing at my computer, watching baseball games, sharing thoughts with others in my same boat, these all help me to enjoy life even when I am still hurting. Thanks Jan. | |
| From Liz Allan of Scotland | 22/09/2002 |
| Email elizaga@supanet.com | |
| Thanks Jan for all the work you do on this excellent site. Much appreciated. It is so sad to read of many of us with grinding chronic pain. My 'healthy' friends seem to find it difficult to grasp, also to accept that pain can not always be controlled with painkillers. I find I tell them less and less, sidestep their questions, like "Surely the doctor can do something"... I'm sure they think I'm feeble and not doing enough for myself. If they only knew.... Because I'm trying to ;'accept' and live with the pain and lack of mobility, they think I am giving in. Makes me feel isolated, but then I come here and read about others, who do understand, and I feel comforted. Not meant selfishly, I certainly wish we were all painfree. Keep pacing and smiling, everyone, but don't feel guilty when you have a spell of being 'down'. We do know the only way back is upwards... Upwardly mobile?!! Good luck, Peter, with your diary. Liz | |
| From Trish of Hereford | 19/08/2002 |
| Email trish@ninjet.freeserve.co.uk | |
| Hello All I have just found this site and it looks really good. i just wanted to tell everyone that I have just been on a pain management course, it is really useful, the encouragement and advice they give is endless so my tip would be go for it! Trish | |
| From Roy of Argyle, Scotland | 20/07/2002 |
| Email n/a | |
| Thank heavens I have at long last found a site which is for people like me! Thank you for being there. This is a wonderful site, I've read all of it. It is all so very helpful. I have been in pain since I woke up from an operation two years ago. The doctors don't seem to believe me and I have little help. Now I hope to meet others like me and get some real help. Thank you again for a wonderful site. Roy | |
| From Bristol Cancer Help Centre of Bristol, England | 20/07/2002 |
| Email n/a | |
| Dear Jan, This is a wonderful website, which I am sure helps a great many people. For general information, anyone reading this edition and the 'worried about cancer' section, should know that the Bristol Cancer Help Centre, which has been going for 20 years, uses a programme which incorporates very many of Jan's ideas. In particular, we teach people to use their inner resources through meditation, relaxation and guided imagery to help them to manage their cancer, and complementary approaches such as diet, massage, and healing. People use these alongside their orthodox treatment and many find them really helpful. anyone wishing to find out more about the Centre can visit us at our website www.bristolcancerhelp.org We also run an education programme for professionals and others interested in the approach and have a helpline on 0117.9809505. We look forward to hearing from anyone who is interested and will endeavour to help. Pat Turton, Director of Education and Development, Bristol Cancer Help Centre. | |
| From Liz of Surrey | 11/06/2002 |
| Email e.goulty@virgin.net | |
| I just wanted to say thanks to Jan for working so hard with setting up this website I am shortly due to have an Intrathecal Morphine Pump implanted (which I have both good and bad feelings about - the trial was a total success I managed to do things that I hadn't been able to do in 4 years. However there are a lot of things to go wrong with the Morphine pumps and so I am a little scared). Being able to look up this website and read what other people have to say and their stories etc., means a lot to me - I don't feel so isolated - I don't have to keep my 'coping and feeling happy mask' on which I do when I talk to my friends and relations so they don't know how I am really feeling. Jan, thank you for making it possible to share our real thoughts and feelings with others who all know and understand what we are going through. | |
| From Carey | 22/05/2002 |
| Email n/a | |
| I saw the site when looking for someone to make contact with who has the same or similar conditions to myself. Boy was I pleased to find it...Since then I have made friends and retained a few of them for regular contact. I would like to thank Jan for her efforts in producing the site and giving me the opportunity to make friends with others in the same unfortunate position as myself. Well done Jan and the contacts who help us all keep our heads above water at stressful times. | |
| From Mary Corrie of Glasgow | 20/05/2002 |
| Email marcorrie3@aol.com | |
| enjoyed my first visit to the site found it very informative and helpful. look forward to many more informative visits | |
| From Jill Johnson of Stoke-on-Trent | 15/05/2002 |
| Email JillJohnson2001@Hotmail.com | |
| I am a 41 year old who has had to retire from work at the hospital due to a chronic back problem. I have severe disc degeneration in 5 levels and have a problem at L5 which has taken the use of my left calf and foot. I am currently waiting to see my surgeon but as he has said before it is not looking as though surgery is an option. My life has totally been upturned as I am a married Mum of 2 teenagers and I have been so active in the past. It is hard to think positive at the moment but I am trying and it is nice to hear from people who are in the same boat. | |
| From Linda Percival of Lincolnshire | 12/05/2002 |
| Email linda.percival@which.net | |
| Hello everyone, I have just found this website after much searching for support groups. Reading some of the messages made me weep - my problems seem quite trivial compared to others. Nevertheless, I feel very low this weekend and am hoping this website will help me. I am 51 years old and have a chronic lower back problem. Its a long history but it is mainly an unstable sacroiliac joint that has changed my life so much. I have tried various treatments and am now retrying physiotherapy. After 3 treatments I feel quite bad and can only walk for about 10 minutes before the awful sensation of my lower back about to go into spasm overwhelms me. I am off work at the moment( I am a teacher). I am about to try Pilates and am very committed to try this as I know I need to strengthen my muscles from within. Would love to hear from anyone. I know how alone we can all feel. Linda | |
| From debbie of newcastle upon tyne | 09/05/2002 |
| Email nebbydebbie11@hotmail.com | |
| hi everyone great new site, love all the advice and info.I have chrondamalatia in my left knee and degenarative disease of the spine. I have been in pain for too many years to count. tried loads of treatments/therapies. would not live without my tens.and of course my cocktail of medication.Any way i manage to work part time in a gp's clinic as a receptionist.and have just started going to aquafit which i find a great help, even though i can not manage all the exercises, its nice to get out.i would love to hear from others in pain, and i will be a great pain pal.thanks debbie | |
| From Chris Knight of Scotland | 30/04/2002 |
| Email n/a | |
| A great site Jan - the best info I've found anywhere - Thanks! Chris | |
| From Elizabeth of Bangor: Northern Ireland | 26/04/2002 |
| Email n/a | |
Hi, I have just come across this Web Page and I am really impressed with what I have read. I have had back surgery 18 years ago and then 2 years later I was put in a body cast from the chest to lower back for 4 months which was of no benefit. I have now been diagnosed with osteoarthritis of neck,shoulders,spine,hip joints and knees. I really find it hard, especially with family as you don't want to complain,and they can see you are in pain, so for me I think this will be a wonderful site to meet others who really understand what's it's like. One thing I really have picked out is be POSITIVE. Thank you Elizabeth | |
| From stacey of york north yorkshire | 25/04/2002 |
| Email shrek@churchill65.fsnet.co.uk | |
| well done one and all, what a lovley new sight . aiming to give information to others is brill, letting them know they are not isolated cases is even better. keep up the good work!!!!!!. i hope every one is well and enjoying the sunshine as much as me . take care from stacey xx | |
| From Jan Sadler of painSupport | 25/04/2002 |
| Email jansadler@painsupport.co.uk | |
| Welcome to the painSupport Guest Book. Feel free to add any comments or suggestions to the Guest Book | |
Page 1 of 1 |