# hypermobility



## Mojosue (Aug 30, 2002)

Just saw a chiropractor about the chronic back pain (upper left). He says its hyperlaxity or hypermobility in the back. So I check out some more details on the net and then I understand why he asked if I sleep okay... Thing is, I seem to have had loads of symptoms of fibromyalgia, but I do sleep okay... Presume some of these symptoms can be caused by hypermobility? clenched jaw at night, fibrositis (that was a diagnosis many years ago), chondromalicia patallae (again diagnosed in youth) and a fair few moreI have stayed off painkillers for as long as possible, to the point where its unbearable, cant stand, cant sit, sobbing in tears. I realise maybe Im putting up with more than I should, when the doc says do you have painkillers and I say no, that doesnt mean it doesnt hurt like hell. Maybe thats been misunderstood. I have been doing yoga postures for a few years and this has helped me deal with the pain from time to time... Ill be back to the GP next week to press home some more points, and then back to the chiropractor to point out a few things I forgot to tell him (my ankles are wonky - not sure he spotted that, my knees were already diagnosed dodgy, Im tolerating pain others may take a parcetamol for)So can you get chiropratic treatment on the NHS, I mean not referred to prive BY the NHS, but actually paid for??? Or at least assisted payment? Not one to ask for something for nothing. I pay for me taxes and me meds.. Lastly, nice to know Im not going nuts, this pain has made me look like some kind of weird nutcase malingering - I look fine, healthy, fit as a fiddle, apart from the searing agony!!!! :0)phew thanks for listening anyone who did... Suex


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## Mojosue (Aug 30, 2002)

doh... just did a search for what I was diagnosed as years ago - so long ago I nearly forgot. Fibrositis. Docs said I may grow out of it. Anyway lots of backache and IBS later the chiropractor says fibrositis is called something else nowadays and I promotly forgot what he called it. So I do a search on the net and blammo, there it is under my nose Fybromylagia..Im not chronically fatigued, and my sleeps not too bad as I say... but to think I was diagnosed as a child and I just kinda forgot about it - but also, slightly annoying is the GP never thought of checking out the previous records ... Grrr... now I think about it..Im getting mad I have to go round in circles for years chasing the unknown when it was right there.Deep breaths, and back to the yogic breathing..Sue


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## squrts (Aug 14, 2000)

a lot of us,i think,remember symtoms from childhood.i had two elective bowel surguries(for crohns) that,had i known about FMS,i would probably not have chosen to have.for someone whos wonky and dodgy,your doing pretty good,lol,at least your on the right track now.i say,dont suffer any more than you have too.if you choose not to take painkillers fine,but i wouldnt be without mine.


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## weener (Aug 15, 2000)

Hi Mojosue, I love your name. Fibrositis is what my internist called Fibromyalgia. I also do yoga and see a chiropractor for back adjustments. I'm not sure what NHS is? Can you explain further? In Ontario, Canada I'm allowed a certain amount on a yearly basis I think its about ($200.00) that is paid by OHIP (government insurance plan). The chiropractor is paid roughly $l0.00 from OHIP and I pay $l8.00 out of pocket for the visit. I don't need a letter from my doctor for this treatment. As for the looking fine, but feeling like #### we can all relate. That's a part of what makes dealing with fm so difficult. Try to hang in there. By the way, before I forget WELCOME to our group.


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## M&M (Jan 20, 2002)

Welcome! Sounds like you're on the right track. You're right, I hate hearing "Well, you look fine." But, I don't see that ending in the near future...Maybe if we learn how to do that crazy movie makeup we could make ourselves look as bad as we feel?







Or not...LOL


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## Mio (Dec 19, 1999)

Hi Mojosue.and welcome!







Hope it goes well for you next with you GP and chiropractor! Itï¿½s difficult to hurt so much and look fine...and hear comments about it. Itï¿½s frustrating! /Mio


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## Mojosue (Aug 30, 2002)

Hi everyone... just had a fantastic weekend. Yeah, I wouldn't deny someone the right to take painkillers - you gotta get the balance to make your life bearable... and we all have different tolerances and chemistry and psychology for what gets us through the day.I have to see the GP on Tuesday and get her to check back in the notes to see if the fibrositis was diagnosed way back when, but I definitely had/have loose knee caps... So hypermobility definitely, and fibromylagia possibly so far. The chripractor made a huge difference to the aching and pain.... Not wanting to get too excited too quickly, maybe just coincidence, but the IBS problems have eased dramatically.. The NHS is the health system here inthe UK, we pay our taxes and the government provides us some basic health care (alledgely). The employed people have to pay for prescirption medicines - unemployed, those on estate benefit do not pay - but its often at a lower price than privately (although some medicines are cheaper off the shelf). Some treatments are not NHS - I had to pay for the chiropractor... But ï¿½30 well spent so far!!! Cant wait to see how this week pans out... best wishes Sue


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## Mojosue (Aug 30, 2002)

Well the GP was pleased for me, but the bad news is no treatment on the NHS. As she said its madness because he's done a better job than she could have ever done. If I werent in heaven cos Ive been having BMs and my belly was better and my back hurts less and I can think again, I would be fuming. In fact I am and I will start a petition to lobby the government to get osteopathy on the NHS. It just encourages the conspiracy theory that the NHS wants you to be taking drugs your whole life which keeps them in business, rather than actually cure you. If I had been on painkillers I would have cost the NHS loads more, (and then the NHS keeps the pharmaceuticals in business this way) than a ï¿½30 trip to the osteopath. Okay, so I might have a couple of visits, and this cost build up - but gees, the immediate pain relief is so massive I can hardly believe it... Rather than manage the pain, its iirradicating it.. big time. I feel so lucky! Im also trying to keep a balanced mind in this moment, to see that it could all creep back in if I dont keep treated, if I go back to my old ways - I dunno. Apologies for this long rant, Im letting off steam and I cant hold back how much happier I am. Man, I was IBS D for a couple of years and then IBS C - nothing would move my belly or shake it into action. Even with my period coming (the worst time usually) Im going, normal BMs, and this morning for the first time in ages IM STARVING!!!!!!! Gimme foooddddddd... gimme gimme gimme gimme.. If I stay this week for another year Im gonna have some damned wheat bread, cos thats the thing Ive missed so much!!!! MMMM toast. Im so excited. Okay, I think thats it for now. Im gonna do my work now and then tonight write my petition and see what the local government authority make of it.. take care everyone, really really hoping good things for everyone.. one and allSue


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## Susan Purry (Nov 6, 2001)

Hi MojoSue, welcome from another UKer. I believe it is possible to get osteopathic treatment on the NHS - in *some* areas. I pay for mine, and luckily my osteopath lets me pay a reduced rate when my income is low. Here is an article on hypermobility. It's about teenagers with M.E/CFS, but it still may be relevant or informative..?*Joint Hypermobility More Common in Teens With Chronic Fatigue Syndrome* http://www.medscape.com/viewarticle/442357?mpid=4649


> quote:NEW YORK (Reuters Health) Oct 01 - The prevalence of joint hypermobility is significantly higher among adolescents with chronic fatigue syndrome (CFS) than among healthy control subjects, investigators from Johns Hopkins University School of Medicine in Baltimore report. Dr. Peter C. Rowe and associates evaluated 58 consecutive patients 10 year of age or older who presented to a tertiary care referral clinic for CFS. They compared the findings to those of 58 age- and sex-matched controls presenting to a dermatology clinic and 58 prevalent CFS patients who attended the CFS clinic for routine follow-up after being diagnosed prior to 1997. The subjects were assessed using Beighton scores, "a commonly used reliable measure of joint hypermobility, possible scores for which range from 0 to 9," the researchers report in the September issue of the Journal of Pediatrics. The median Beighton scores were 1 for control subjects and 4 for the incident group of patients with CFS p < 0.001. The proportion of subjects with scores of 4 or higher was significantly greater in the incident CFS group compared with controls, 60% versus 24%, respectively, p < 0.0001. These findings were similar between the incident CFS and prevalent CFS groups of patients. Combining data for the two groups with CFS yielded an odds ratio for joint hypermobility of 3.5 compared with the control subjects. *Dr. Rowe's team offers several suggestions as to why adolescents with CFS are more likely to exhibit this phenomenon. The two conditions may reflect a generalized connective tissue hyperextensibility, they suggest, or joint hypermobility may be associated with other factors that independently contribute to CFS symptoms. Either way, they conclude, "the physical finding of hypermobility cannot be attributed to an unhealthy response by the patient to his or her illness." *J Pediatr 2002;141:421-425.


You have to register to view medscape articles, but it is free and very worthwhile.


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## Mojosue (Aug 30, 2002)

Thanks to everyone who posted - as with most people I have good days/weeks and bad ones. Been through both since I was last hereI saw the osteopath again today and had a great deep massage and adjustments in the back and shoulder. He mentioned the left shoulder is hypermobile and the right is 'normal'. What Im dealing with is a mish mash of bits and pieces, not one specific diagnosis - well apart from Hypermobile in some joints, fibrositis type pain in muscles in the back and no knee cartlidge. IS the IBS caused by those, are they unrelated - well I guess Ill find out in time. recommended to keep up the yoga, work on the parts that dont bend so well, stretching muscles etc and to try a belly massage for the abdomen (the muscles seem to get tight). I think its aggravated by wheat, but Im still testing that theory. I know when it feels good and loose I dont have the desire to stretch so much, when it feels bad I just cannot stretch enough or for long enough. I dream of standing under a waterfall doing forward bends.... (If I do it in the shower it wastes too much water and becomes immoral practise I think) I keep forgetting how well and loose the back should feel, when it slowly contracts back to clunky, stiff and painful.. Then when its stretched out and funky again, Its truly amazing..He says he's happy to just see me as and when I feel the need, so that should help keep costs down. Now I just have to stay off the wheat and see if my belly kicks itself back into action like it did last time. I usually have IBS C.... (like this week :0( ) Fingers crossed for a better week next week. Yoga mat, here I come for some serious relaxation and stretching. Suex


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## Susan Purry (Nov 6, 2001)

Sue, Yoga's great for pain and flexibility isn't it


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