Hand problems, pain and other issues.

[Guest]

I feel like I'm slowly loosing the strength in my hands. Has anyone else experienced this. Help, I'm a beautitian!!!

[LianneS]

Sometimes.... I suffer mildly but this last year has seen my hands become sore and yes I have less strength.... It isnt a daily thing with me though...

Im training to do reflexology and then looking to train to become an Occupational Therapist so specifically with the reflexology I was worried but it actually seems to help my hands (might be the movement I do)

Might be worth massaging your joints daily

Lianne

[bexg]

Interesting.
My hands are often sore and feel weak, pins and needles etc
I squeezed my husbands hand "ouch " so although my senses told me they were weak they actually weren't.
fine motor movements take more mental effort on bad days.
I have a splint which helps from a comfort perspective.
Take care

[libby]

i had very little strength in my left arm for a few months after subluxing it really impressively about 6 months ago. i think it must have been the result of nerve damage, and it slowly went away after a few months - but it was pretty scary while it happened.
perhaps you could consult a neurologist - or better still, a specialist in hypermobility?

[Guest]

I have totally lost the use of my left arm and most of the use of my left hand for periods of time but it has always come back eventually. Same with my legs - walk with a stick from time to time (for periods of up to 5 months) but it comes back - the thing seems to be to support joints as much as possible and keep mobile. A physio told me to give my OH a massage with a lot of oil cos it would be nice for him, and warming exercise for the hands. Also try to keep them warm all the time - wear gloves when driving etc.
Hope the same will apply to you

[Guest]

My wrists have been getting worse to the point where i had been wearing a brace and taking pain pills and i hade to stop writing. then i went to the pain doctor and they gave me shots that gave me the ability to use it again.



mabey you should see a pain doctor

[LianneS]

Ive no strength in mine today.... they dont hurt but its such an effort to type and do things, they feel so stiff....

Like I said theres no pain (so thats a blessing) but the stiffness is so annoying!!! Im guessing its to do with the cold weather so Im sure most of you are nodding your heads and agreeing with me now...

Lianne

[platinumstar7]

Yes you are not alone!

I have also had problems with my hands especially my right hand. I have got splints from physio which helps for a short time but I dont know what the answer is at the moment.

I am off to see Rosemary Keer (physio) on 8th dec 2005, I will ask her advice.

Hope you get some good days too!
Take care
Alison

[LucyM]

I loose my hands to the extent I cannot pick up or carry anything at all - otherwise I drop it - including my 1 year old daughter so when my hands are that bad I normally get people to help me! I generally find I rest them for a couple of days and then they tend to come back to me.

Most of the time I don't feel like they belong to me!! LOL or any other part of my body, that tends to miss behave and not do what I want when I want

All I can say is don't give up and just do things in short stints. :twisted:

[nonyanomemory]

Hi LucyM, welcome to the site . There is a little information in parenting children with hms and being a parent with hms on the site. Some tips about avoiding problems with the very young children and a few different stories about different ways of doing things. There is also a database found via the home page which is helpful. A few members here have recently had babies - which makes us all happy - so welcome to the happy crew. If you want to tell us about your hms - we will listen if you don't want to yet thats ok too. Any questions please don't hesitate to ask and likewise any pearls of wisdom about hms are always welcome.

Have you always had problems with your hands?

nonya

[LucyM]

I have been in serious pain for the last 3 years and minor pain previous years on and off. Since having my second child who is now three and a half. Things just went from tolerable to just plain crazy. I have always dislocated and broken my left ankle Broken twice and dislocate it 3 - 4 a year. Now it is so floppy it just comes out at will. So I really have to concentrate when I walk, otherwise I just fall flat on my face. Normally up town or down the stairs at home. I have osteoarthritis in both my knees. Followed by arthritis in my spine and hip. Apparently Neurological damage between L4 & L5. My wrists and hands just stop working at will and generally in the most inoppurtune moments. My Rheumatologist can't quite figure out why at 32 I am falling apart. The closest he has come to diagnosing me is Seronegative spondylitis and polyarthritis. He has had me on steroids and Sulphasalazine with not much effect. So the next step is metotraxate. Today I start with Butrans patches for the pain as the others ie iboprufen, Tylex, Paracetemol, etc dont help. I am also unable to swallow any tablets for the last six months, which doesn't help.
I had SPD with my third child and ended up having a C-Section at 36 weeks as the pain was intolerable. I basically crawled everywhere for months. I have yet to be diagnosed with HMS but score 9/9 on the beighton score and have 2 major and 2 minor on the other bit. I see my Rheumatologist soon and will put the HMS theory to him - As it is the only one which fits all my symptoms. The only query I have is the high ESR level and C-RP level. My physio can't do anymore until the inflammation has died down in my spine.!!!!!!

Does anyone have any ideas.

Sorry to go on so long - but I thought it was best to give a clear picture!!


Take care!!!

[Sez]

I get a lot of pain in my fingers, mostly the third joint where they meet my hand. I really have to concentrate when I need to write for long periods of time (such as minuting meetings) and often come out in agony. The worst part is that my employer is insisting that minuting meetings is an "integral part of my job" and I've been having so many problems with my employer lately that I feel I'm at risk of losing my job. So I'm just doing it now and getting on with it. I had to minute for two hours yesterday, and I have another two hours this afternoon. Last night I was in so much pain from Sunday night and then sitting in an uncomfortable chair trying to write for two hours straight that I wasn't able to go and see the horses. But what else can I do - if I say no, they'll just say I'm clearly not capable of doing my job and I'll end up re-deployed to the call centre (and personally, I'd rather not work at all than work down there ).

[LianneS]

The pain that I get in my hands used to be just a radiation around the entire hand of cramp like pains, however now I find the pain can be a sharp pain in my thumb joint....

I cant open jars anymore, often find when I pick mugs up I struggle to hold them and my wrists just keep going aswell....

Ive never dislocated anything though

Lianne

[nonyanomemory]

info on ESR levels

info on C-RP levels

Hi Lucy, poor you - I have given a couple of links above about these tests and hope they are helpful when you discuss the results with your specialist. You certainly have been having a rough time of late. Did your current rheumatologist give your beighton score - because that seems to indicate along with the problems you describe a strong possibility of HMS and discussing ehlers danlos hypermobility with him/her I think would be a good idea.

Has the physio suggested the possibility of a course of hydrotherapy as an alternative to physio? A referral to a podiatrist for assessment? A pain management course is also helpful for coping techniques but in some parts of the country there is unfortunately a long waiting list. For some Butrans patches are helpful - let us know how you get on, there is a thread on the boards dedicated to pain and pain management.

With regard to your hands - have you received specific advice from an occupational therapist at all specialising in supports etc for hands and help with equipment that can be made available in the home.

Perhaps your rheumatologist would consider referring you to one of the specialists in HMS/HEDS - details of which can be found on the home page of the site. You mention difficulty with swallowing tablets specifically in the last six months - this must be distressing for you.

In the meantime Lucy I hope that the patches start to offer you some effective pain relief and the inflammation that you are having at the moment eases. Take care nonya

Sez, do the minutes have to be hand written or would a laptop help? You are having such troubles at work - I hope something is sorted out soon.

Lianne - you are not alone in your description of hand troubles - it sounds as though you may be experiencing subluxation rather than full dislocations. Over use pain is very common in hypermobile hands and for those with hms what may be considered a normal amount of activity in a person without hms, can cause pain for the hypermobile. Aides and assistive devices can help on a daily level to prevent overuse injury.

If anyone has any helpful exercises - that they have been given to help maintain hand strength via their physio or occupational therapist they would be most welcome. I have experimented over the years with playdo a fun option - rubber bands - which the physio showed me how to use - but my floppy fingers found a bit hectic .....anyway I have gone on quite long enough so will be off now. I have recently started to do a little painting in the form of watercolours and have to make sure I pace myself so taking frequent breaks is really important - i use a kitchen timer and when it goes off - stop otherwise I find my hands don't work at all. I am persevering though as I find it relaxing.

Have a good day all.
nonya

[LianneS]

Lianne - you are not alone in your description of hand troubles - it sounds as though you may be experiencing subluxation rather than full dislocations. Over use pain is very common in hypermobile hands and for those with hms what may be considered a normal amount of activity in a person without hms, can cause pain for the hypermobile. Aides and assistive devices can help on a daily level to prevent overuse injury.

Sorry but my thinko hat is coming out again, can you just explain subluxation... I was under the impression that was just another word for dislocations....

Lianne