fibromyalgia & hypermobility help please?

crazy_girl

I've looked it up online but I could do with some advice with people who've been there please.

I've been suffering for 11 years now with painful and clicky joints.


It affects my shoulders, elbows, knees, ankles, toes, fingers, lower back and wrists. It can vary from a low-level pain to a complete inability to sit up, get up off the floor or use my hand to open jars etc.


I get very tried all the time and simple tasks take me hours to complete and really knock me sideways. On bad days I can barely get out of bed and I probably wouldn't do so at all if I didn't have a baby to look after.


I have mental health problems and am diagnosed with BPD and OCD. I also have a lot of depression symptoms and my mood is pretty low most of the time (but I put a brave face on it)!


I also have Dyspraxia and this makes me super clumsy. I'm always bumping into doorways and furniture and lately I've been falling over a lot over nothing, just randomly losing my balance.


My Mum is hypermobile and has arthritis. I can do some of the hypermobile things such as put my feet flat when I'm on my back, rotate my elbow round without moving my wrist or shoulder and put my hands flat on the floor when I'm bending over.


I've had an arthritis blood test and it was negative and one of my knees X-Rayed but that showed as normal.


If anyone who has particularly Fibromyalgia recognises any of these symptoms, I'd be very grateful if they'd let me know as I'm absolutely at the end of my tether now. This has been getting steadily worse since I was 18 and it's started to become quite debilitating now and I'm worried about the future.


Thanks in advance.

crazy_girl

Forgot to add that I also have IBS and some other 'tum troubles' that I've been referred to gastroenterology for.

Poppie68

Go onto the fibromyalgia uk site lots of other people on there with identical problems to you.

I suffer from fibro and it is a great site for help and advice.

pauliboo

Take a look at this forum http://forum.marfan-forum.org.uk/viewforum.php?f=25& it may help?

What you're complaining about sound like EDS (Ehlers-Danlos syndrome) to me, but you need to seek specialist advice.

crazy_girl

pauliboo wrote: »

Take a look at this forum http://forum.marfan-forum.org.uk/viewforum.php?f=25& it may help?

What you're complaining about sound like EDS (Ehlers-Danlos syndrome) to me, but you need to seek specialist advice.

I've Googled EDS and it sounds a lot like me and also my Mum has problems with her connective tissue so there's a genetic link there.


I'm always covered in bruises and lumps from bangs and bumps but I thought it was due to my Von Willebrands.


I've got an appointment with my Dr (25th) so I'll see what he says.


Thanks

crazy_girl

I feel guilty too as I think my baby has what I've got. I've heard him clicking when he's playing on his mat

cara09

Hi,

I noticed your post as I am a regular using of this site and recognise your symptoms as I have HMS. It sounds very likely to be Hypermobility Syndrome (HMS) which is also known as EDS Type 3. I recommend checking out the website for the UK charity The Hypermobility Syndrome Association for more information. http://www.hypermobility.org Also on Facebook and Twitter @HMSAcharity

Fibromyalgia can be a condition than run along with HMS or it could be a misdiagnosis. You can check diagnosis criteria on the HMSA website. Unfortunately HMS is often overlooked by doctors. This is something the charity is trying to improve. I recommend asking your GP or a referral to see a Rheumatologist for diagnosis. HMS is a genetic condition can be passed onto children but it can vary in everyone with some people more effected than others.

If you would like more info or advice contact me at socialmedia@hypermobility.org

Cara, HMSA Social Media Coordinator

pauliboo

Thanks for the link Cara, I too suffer from Hypermobility but that comes secondary to my Facet Joint Arthritis.
I'm currently trying to find out if I might have something else though. I've been suffering with tremendous pain in my hip for the last 18 months and a specialist consultant (but not in Rheumatology) has suggested Ankylosing Spondylitis, it does seem to match, but I have this nagging feeling that it's something else.

I'm going to see my old Pain Specialist at the Pain Clinic in a few weeks, I haven't see him since 2007 and my condition has got much worse since then. I'm hoping he'll shed some light on my condition - and more importantly what I can do about it.

I haven't been able to keep up my physio exercises on my back as it hurts my hip too much. Ah well. I'll take a look on your site. Thanks

nixe

i have hypermobilty and fibro
but i have lupus sister of rhumertoid
it affects hips
but past 6 weeks+ have come down with prob rhumertoid in the elevens at the back of neck.
lupus also affects my stomach
try looking up mixed connective tissue dissorder.

nixe

crazy girl i passed it on to my daughter
but i do have others in the family who are also hypermobile.
doctor said if this would have picked up on earlier
it would have saved my daughter a lot of pain.
as physio would have helped somehow.

crazy_girl

Thank you nixe, my son is only 7mts, I'm going to mention his clicking to the doctor on the 25th.