Fibro and hypermobile!: Hi everyone I... - Fibromyalgia Acti...

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Fibro and hypermobile!

littlemy profile image
14 Replies

Hi everyone

I have been to see a therapist as i'm not having any success with medication in terms of managing my fibromyalgia.

Whilst going through my history etc and examining the therapist advised me that I'm hypermobile. On examination she also advised that my pelvis is out of alignment

and that the arch on my left foot has fallen. She was amazed that nobody including physios have picked up on this. I will be speaking to my doctor about this next week.

Has anybody else been advised they are hypermobile too and if so has does it impact on you? I'm on the verge of loosing my job which is a very static job in an office where I spend all day at a desk.

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littlemy profile image
littlemy
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14 Replies
claralove profile image
claralove

Hiya I'm have hypermobilty..as well however the arthritis has set.. . My pelvis and spine causes problems.. My feet are flat..my rhummie told me the damage was done as a kid..When I wasnt aware of the hypermobilty.. My pregnancies made it worse..I m still technology hypermobile..It still causes problems.. My collengen is faulty..it's just I wouldn't score on tests anymore.. Hope this helps

Fibrofoggiest profile image
Fibrofoggiest

Hi littlemy,

I don't have hypermobility, but I do know of plenty of other people on here who do have it in conjunction with their fibro.

I hope that others come along with much better advice than I can give, but send you lots of positive healing vibes 😀

Foggy x

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read that and I want to sincerely wish you all the best of luck with finding the answers that you are looking for. It is not something that I have been diagnosed with.

All my hopes and dreams for you

Ken

ElleBr profile image
ElleBr

Hi littlemy, I'm sorry to hear you've been having a hard time with this. I was diagnosed with hypermobility syndrome at the same time as fibro and getting osteoarthritis in the knee I dislocated many years ago. Oddly enough this knee gives me less trouble than the other one!

I also work in an office and I wonder are your work aware of your difficulties? You really need an occupational health assessment and your work need to make reasonable adjustments as like me you are probably covered by the equality act. I now work in an office downstairs and have a fab chair which is much better than the normal ones etc. Occupational health were great and gave me lots of other advice on coping at work too. It's still a struggle but much better than before.

I hope this helps a bit and I wish you well. Elle x

Sorebones profile image
Sorebones

Yes. I have joint hypermobility too. Always was double jointed when younger. It was great at the time. The splits were easy for me. Thought nothing of falling backwards into the crab..... Oh those were the days ha ha.

Not sure if it makes any difference to my Fibro though. Not that I can think of, could be the fog.

I am however wondering if it has affected my OA.

I will read responses with interest. Hope you are having an ok day 😺

littlemy profile image
littlemy

Thanks for your responses. Fortunately I'm not bed bound but I'm having problems sitting upright for very long,standing static for very long and also walking for more than about 20 minutes. All of that along with fatigue and nausea is making life challenging at present.

My work have been great

great. The problem I have is due to not being able to sit upright properly for long due to pain in tender points in lower back and buttocks. As I also have tender points in knees (although I don't think my knees are too bad) I have been told those kneeling type chairs could make things worse. I've had my job for 14 years since leaving school so am sad that it's looking like I will be dismissed.

Hoping my therapist can help me in the meantime so that I can get my life back to some kind of norm. Thank God for bean bags and sofas.

I could never do the splits as a child sore bones so being hypermobile never crossed my mind! X

ElleBr profile image
ElleBr

Like you I never thought I was hypermobile but always had sore bones. Didn't realise I was overextending as i didn't know any different. I couldn't possibly use one of those kneeling chairs I can't kneel at all now :-( My work chair has an air cell in the seat and in the lumbar support which kind of moves as you do so it reduces pressure whilst you're sitting. Whilst nothing can help 100% It certainly means I can sit for a bit longer than I could before xx

RobertaWorthing profile image
RobertaWorthing

Hi, I don't know what hypermobility is but presume it means a lot of movement. If that is the case then I have definitely not got it. I did make a comment a week or so ago about not being able to walk very far as the balls of my feet feel red hot and its like walking on blisters, and I think I also mentioned that I had been told the pain in my knees was because my arches had fallen which makes the knee out of alignment with the hip, and all that could be offered were orthopaedic shoes, which I declined. I have always had sore bones but remember as a teenager going on the youth club rambles but being totally unable to manage the rock n roll dances later the same day which everyone else looked forward to. I have never been able to run for a bus or do athletics but just thought I was being feeble and ought to make more effort, but now I know why. As I was a business woman and had my own recruitment agency for many years I always tried to look my best and have good posture, but now that I'm 70 and have just had a double mastectomy, I am going to start looking how I feel and ditch all the pretence. After retirement two years ago because of the fibro, I intended to live life disgracefully, have fun and enjoy myself, but now I am just going to grow old and grey, spend my time watching telly and I might even learn to knit, no forget the knitting my fingers couldn't do it! Cheers!

BlueMermaid3 profile image
BlueMermaid3

Hi there

I have HMS (Hypermobility Syndrome). As a child it was always known as simply being double jointed.

I was a superb gymnast at school and could walk in the crab position.

When I saw a Physiotherapist recently I mentioned that I have HMS (along with Fibro, Chronic Fatigue Syndrome and Osteoarthritis).

When she examined me, she said "goodness me you do have Hypermobility Syndrome".

As far as I am aware (and I'm happy for anyone to correct me if I'm wrong) all HMS means is that our joints are far more flexible than "normal" people.

For me personally, I think that HMS causes my Fibro to be more painful but that's only my opinion.

I've had Fibro for over 30 years and have been a member of this forum since 2012 and HMS has come up quite a lot.

I hope that some of this may help. As there is nothing you can do about HMS (to my knowledge) I would guess that is why it has not been mentioned to you before. It is also possible that your GP does not know that you have it.

Hugs

Lu xx

MariLiz profile image
MariLiz

I'm really interested in this post, as I've been diagnosed with Fibro for about twelve months now. When I was having a massage at the chiropractic clinic the lady told me I had all the signs of hypermobility syndrome. I've also been told this at the foot clinic. I do wonder if it might be the cause of the Fibro , because, as I understand it, it means the joints are held more loosely. The tendons themselves are inclined to be over stretched more easily. Thinking back to when I was a child I was always spraining my ankles, especially the left one. I wonder if there is any research being done in this area to investigate a link? MariLiz

dawn21dawn21 profile image
dawn21dawn21

hi littlemy i suffer from fibro and hypermobility my left knee was paining really bad and the rhummy told me for all i had fibro the hypo was making my knee worse he suggested physio which i have tried but still the same.

littlemy profile image
littlemy

Thank you all for your responses.

My gp has now referred me to an NHS rheumatologist (we paid privately to get a diagnosis after 4 years of not getting any answers with the NHS) to get clinically diagnosed with hypermobility.

Hopefully between the orthotics department via the rheumatologist and my therapist I will start to get back to some kind of normal.

Interestingly my therapist said she has yet to meet someone with fibromyalgia who isn't hypermobile!

Wishing you all a brighter day x

LornaG143 profile image
LornaG143

My 4 yr old has just been diagnosed with hypermobility, he has flat feet and wear orthotic insoles which really help him, he can't walk far with pain and getting tired, warm baths and lots of rest and gentle massage seems to help xx

Busterlady profile image
Busterlady

Hi yes I was diagnosed with hypermobility on my Cyndi journey. I'd seen many Arthritic Specialist saw lovely man who'd come out of retirement! He asked me to touch my toes. Easy!!

All other Specialists thought I was a hypochondriac as complaining of pain but had this huge range of movement.

I really hope you get all the help you deserve. Back then looked for pain and keep moving. What no-one realises the huge impact these conditions have on relationships and family.

Good luck and let me know how you get on🤗

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