By Clarabel on Tuesday, February 11, 2003 - 01:28 pm:

OK, I know it is hardly a new topic, but I have been seraching for omse kind of relief. I know not to expect 100% relief - I have set my sights on 40% rather than around 3% as I get now. I am having rouble communicating with the medical world as they seem to think I am already on very strong medication but it does nothing at all for me and nor are the re any side-effects - I am beginning to think I am one of those people who does not absord codeine.
Is there anything out there that works? I have been trying to get into pain management and it is hard work, but I am getting there...

By Az on Tuesday, February 11, 2003 - 02:41 pm:

Hi Clarabel oit is so hard finding a pain relief to suit, it is also hard to reccomend something as we are all different. I cannot use Opiates as I am allergic to them, so the strongest I get are Parecetomol based not much use either. I have however been given the use of a TENS machine that does help a bit, maybe you could ask a physio therapist if you can borrow one to try out. Sorry I cannot be of much help, wish I was then I wouldnt be in so much pain myself
Az

By Clarabel on Wednesday, February 12, 2003 - 06:51 am:

Thanks. I can't use TENS. The doctor thought I was just being difficult, but it makes my pain worse! It is better while I am wearing the machine but always the next day it is 10 times as bad, so I think I shouldn't use it.

By Az on Wednesday, February 12, 2003 - 07:59 pm:

I know what you mean some doctors think we are deliberatley fibbing about treatment for sympathy. I cannot use my TENS on my wrists or back as it plays havoc with my heart rythm although my heart is supposed to be ok. Unfortunatley I dont have any other suggestions for pain relief as I said if i did I wouldnt be aching so much myself The only thing that gives me a few hours relief from the agony is sleeping tablets i am

By Karenprice on Wednesday, March 19, 2003 - 06:29 pm:

HI, I was just diagnosed with EDS 2 years ago, after enduring 7 of my now accumulated 14 surgeries, with 3 more still to go. I am only 20. I was a gymnast before I found out, and due to the injuries i endured lead to the diagnosis...well that and I could put my leg over my head any which way. Anyways, I have been accused of being a drug seeker, and I dont think it is fair. I am only wanting pain relief, and doctors today just dont seem to get the mechanics of the disease. I dont want the narcotics, I want something that will take away the pain. I have even endured 2 bleeding stomach ulcers from nonsteroidal drugs. The relief I have found useful is physical therapy and daily mild-moderate excercise. I know that has to be hard on some people...it is for me. But it is the only relief I have found. I just dont enjoy being stoned on Vicodin and Demerol all day.

By jonbean on Saturday, November 22, 2003 - 08:03 pm:

I'm on Ultram, which works OK and lets me function but I still have lots of somatic pain in my lower back. I'm considering a stronger drug, like oxycontin or duragesic. Any recommendations??

Does the duragesic confine the medication to the lower back? Problems with it?

How do people feel when they are on oxycontin? Drugged out? Can you function?

By Michelle on Sunday, November 23, 2003 - 12:34 am:

jonbean, have you tried anti-inflammatories for your back pain? I can't imagine making the leap straight from Ultram to Oxy. Ultram's not much more than over-the-counter tylenol. It didn't do anything for me. Then again, none of the NSAIDs have either. I've taken max perscribed dosages of naproxen, voltaren, relafen, celebrex, betra, indocin, and probably more I forgot. I'm on Lodine right now... all worthless. The steroid injection didn't do anything either.

My doctors won't consider narcotics because I'm only 22. My doc suggested oral steroids once, but backed off that later. He's wanting to do a steroid injection(s) in my upper back \ shoulder region, but I really don't know about that. I can't function (ie, work or attend college) so maybe I should just do it, but I'm worried about the possible longterm consequences...

Michelle

By Michelle on Sunday, November 23, 2003 - 12:40 am:

By the way, I was on Darvocet a few weeks ago following hand surgery. It helped the pain from the surgery pretty well. BUT, I had to wear a sling, and it just killed my back. After the first two days, I could have done without the Darvocet, except for the pain in my back. So I took them for another day or so. But they didn't help my back at all. Any idea why they'd stop my post-surgery pain, but not my HMS pain?

Michelle

By angel on Sunday, November 30, 2003 - 06:43 pm:

i take a combination of meds and have found if you take them like prescribed and rest alot on top of mild physical therapy that i sleep better at night. my problem is getting through morning after pain.

By Blake on Tuesday, April 20, 2004 - 12:52 am:

Hi,
I can't offer any help on what to take I'm afraid. The only medication, I was given it at 18, (I'm 25 almost 26 yrs old) that actually took away 80% of the pain rather than the few percent of asprin or parecetimol (sorry not slept yet so spelling is not good.) was stuff that contained Ibruprofen, tried three different versions and had the same reaction to each so I can't take them!
Tried physio as a kid (HMS became really apparent at 7, finally diagnosed at 14, though one jerk.. Dr. still kept sending me for more blood and other tests! They quit offering me stuff cos the pills and physio don't work or I'm allergic.) the physio would make the pain worse for days, like any activity even just going down the road to the shop.
I only get 4/5 hours sleep max and often go a day without. I have always slept little cos of the pain and I'm hesitant to try sleeping pills cos lack of sleep does not affect me and well truthfully I HATE even taking an asprin when I have a headache. I know a pain I can actually get rid off but I don't, since I'm in agony all the time anyway, see that a little head pain makes that much difference and I suppose its from 'em not taking away the more intense pain of my HMS. :
I rarely see my Dr. (nice new guy) I quit going to the Dr.(to the Jerk) for my HMS about 6? years ago, but if anyone knows of a non Ibruprofen containing medication that might help I'll willing try it, if I can get my hands on it.
Hope the rest of you have better luck with your own pain. :D
Blake.

By Blake on Tuesday, April 20, 2004 - 01:35 am:

Hi,
Me again, should have put this at the start of my other post.
I just found this forum and as much as I HATE typing it its good to know I'm not alone with having HMS!
I'm affected everywhere, I have pain in every area of my body. *sigh*
I'm lucky in that I don't fully dislocate anything, but I am always in incredibly pain.
I've never met or talked to others with HMS etc... the jerk had the gall to tell me he was hypermobile! Well that's fine for him, he don't get the agony with it!
I had doctors thinking I just wanted to get out of school, soon shut them up when I told them I taught myself at age 7 to write with my left hand and ALWAYS volunteered that info to teachers just said I'm slower and its not as neat, only had problems when both hands, arms were hurting bad.
Steroids have been mentioned to me to, a couple of years ago, but I was and am also hesitant about taking them, any advice.. well thats assuming the new Dr. would prescribe them, suppose I should go see him about the HMS, but well its always a waste of time and ends up with me being in worse agony.
Oh if anyone wants to talk on any topic, please feel free to e-mail me, more info I'm almost 26 as I said, female live in the UK with my parents, unemployed, was home schooled from age 13 cos well getting around school was killing me and I was home more than in school so parents took me out. I don't sleep much so can be found on the net, it keeps me distracted posting, chatting and searching for stuff.
I'm going to try and sleep.
Blake.