Hand problems, pain and other issues.

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

Moderators: gila, Blaadyblah, Rosie, Retro

Postby Retro » Fri Sep 14, 2007 1:10 pm

Hi Sez,

I agree with everyone above, you really do need to see your GP about this.

As for not remember appointments I use my phone and a PDA to remind me. I set it to remind me the day before an appointment and when it reminds me I reset it to remind me just long enough before the appointment that I can get there if I leave within 10 minutes of being reminded.

Lindsey :hug:
...all the knowledge in the world is of no use to fools... ~ Long Road Out of Eden ~ Don Henley, Glenn Frey, Timothy B. Schmit (The Eagles)

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Postby HMSA Admin Team » Fri Sep 14, 2007 2:14 pm

Topic split for missed appointments go to miscellaneous.
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Postby Sandy L » Fri Sep 14, 2007 9:02 pm

Sez, map out exactly which fingers and where on the fingers you get the pins and needles. It will help your doctor figure out what is going on. Notice whether both the back and palm is affected. If the little finger feels different from the index finger, see if there is a difference between the two sides of the ring finger. See also if there is any difference to light touch in various parts of your hand and fingers.
I am a physician specializing in occupational and environmental medicine. I am not an authority on HMS or EDS, but find I have several patients with the condition and am trying to learn more.
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Postby nonyanomemory » Thu Sep 20, 2007 10:55 am

To discuss Raynauds specifically please post here Raynauds Thankyou.
46yr female EDS H/mobility Type c/over vascular Dxd Prf G
V Prem club ft short stature early onset varicose veins thin skin
Striae o'rthritis/porosis PHN POTS spasms n'pathic pn IBS bladder stuff bulging discs & more!

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hands

Postby Willowsmom » Fri Sep 28, 2007 4:57 am

Do any of you get blister-type skin infections on your hands, especially the fingers but sometimes the palms as well, and especially when they're swollen? Hydrocortisone creams help but they can be stubborn. They aren't allergic reactions, as far as I know; I've been getting them intermittently since my early teens, and they're very much like some of the infections the lymphedema (which I only have in my lower extremities) causes. They've always baffled dermatologists. When I was about 20 I was told I had RA but there were no tests then of the kind they have today; a few years ago my nephrologist (kidney doctor) said I didn't have RA, but I know I have arthritis. My hands swell, my thumbs hurt, my other fingers hurt, my toes hurt, my feet swell, my ankles swell and turn way in (I'm thinking of getting light ankle braces, even if I didn't wear them all the time; they might help with the swelling as well as the hyperpronation), my jaw subluxes any time I open my mouth wide, my TMJ...well, you know. Some parts don't hurt, others do. God bless glucosamine chondroitin, triple strength! It helps me SO MUCH. (That's just my experience, but it was recommended to me by one of my doctors, who had started taking it as a last resort for a very painful problem with her hands.)

Here in Philly the King Tut exhibit is in its last weekend at the Franklin Institute, and the place is going to be open literally all weekend, all night and all day, through the 30th, this Sunday. This evening they had a sign up that said they'd had 1,274,000 visitors so far and "only 3 days to go!" I don't know where it's going next but if you can see it, please do. There are lots of artifacts from daily life--not just gold stuff but things like headrests used as pillows.

Barbara :roll: :)
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Tingling in hands

Postby naama » Mon Nov 26, 2007 3:03 pm

Hi all,
I am not new to tingling in my right hand which, after a slightly tangential investigation of my elbow, turned out to be coming from my shoulder. Not a surprise to me. That was in my ring finger and little finger. I'm so used to it that I rarely notice it any more.
Now I have a 'new' tingle!! It is very specifically between my index and middle finger on the 'webby' bit. It doesn't seem to correspond to when my shoulder is particularly bad, but neither does anything else hurt. It also corresponds with my hand being cold - that side of my hand more than the other. I'm sure it is my shoulder, I just wondered if anyone knows which particular nerve is getting upset that has never got upset in the past when my shoulder has been bad.
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Postby Hayley » Mon Nov 26, 2007 3:21 pm

Hi Naama

I'm not sure exactly if I can help you but when I had the trapped ulnar nerve a couple of months ago, it was the little finger and half of the ring finger which were affected. However, if it's more carpal tunnel problems then it's the other three fingers that are affected. It may be some kind of trapped nerve or even just a circulatory problem of sorts. I would suggest seeing your GP as there are some tests than can be done to check if it's a trapped nerve or other.

Sorry it's not much help, but hope it gets better soon!

Hayley :)
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pianfull thumbs, weak hands losing grip!

Postby zed » Wed Mar 12, 2008 7:54 pm

Hi, just wondering if i'm alone on this one? I've had numbness in my hands and painfull thumbs for a few years now. I've had loads of test and the only thing that the docs have come up with is that my HMS is so severe now the tiny bones in my wrist and thumbs are partially distlocating putting pressure on nerves and blood supply. At one point Raynauds (not sure if spelt correctly) was mentioned but i was told it was more likely to be HMS
I wear a thumb splint when i'm at my worst which i think helps a bit, but the loss of grip is sooo frustrating some days i struggle to drink a cup of tea without spilling it!
I've come to terms with the fact that whatever medical conditions i have there tends to be nothing available that can be done to fix them, i would just be good to know i'm possibly not alone on this one???? :S
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Re: pianfull thumbs, weak hands losing grip!

Postby vixenmeister » Wed Mar 12, 2008 8:57 pm

Hi Zed,

You are not alone in this - sounds very very familiar to me. I can't feel either of my thumbs and have a collection of 'neuropathies' (the surgeons only explanation for pins and needles / numb patches etc). I drop things all the time - unless I really concentrate on them which is odd.
The only things which have helped are my wrist braces with thumb spikes on them and I have to wear them all the time. Not an attractive look my at least I can usually drink tea which is always good. Cutlery though is a whole other ball park which I suppose exempts me from table manners ......

Vix
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Re: pianfull thumbs, weak hands losing grip!

Postby vixenmeister » Wed Mar 12, 2008 9:02 pm

ps I forgot to say an OT did a hand function study with me which is how the braces were provided along with some gadgets that help. If you have not had an OT assessment maybe you should ask your GP for a referal?
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Re: pianfull thumbs, weak hands losing grip!

Postby zed » Wed Mar 12, 2008 9:38 pm

Thanks, feel bit less clumsy knowing i'm not alone. Ive tried the wrist brace but without the thumb spikes but found my skin just itched insanely from the heat!!! The thumb splints i found easier to cope with but still drop things (my daughter finds it quite funny at times)
Have you ever had any treatment that helped? I had one doc addicted to giving cortisone injections but i whimped out and never made the appointment!!!!
Think i've just gotta get on a mission to find a support i feel comfy wearing and one that doesn't look too 'ageing'
Let me know if you've any ideas
Thanks again :bye:
zed
 

Re: pianfull thumbs, weak hands losing grip!

Postby zed » Wed Mar 12, 2008 9:40 pm

Thanks for the advice, i'lll get in touch with my GP tomorrow and see if i can get the referal??? Will let you know how i get on :bye:
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Re: pianfull thumbs, weak hands losing grip!

Postby aninja » Wed Mar 12, 2008 10:47 pm

Hi Zed,

My OT made me some resting splints as she says that even when the rest of our bodies are resting watching TV, conversing etc, we still use our hands, unnecissarily(spelt wrong I'm sure, I'm tired!)

So when wearing these resting splints, I have to rest them! It is helping a little but not been using them long. Might be worth mentioning when you see OT again.

aninja
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Re: pianfull thumbs, weak hands losing grip!

Postby Retro » Thu Mar 13, 2008 4:55 pm

Hi Zed,

I've locked this topic because there have been many seperate discussions on all of the things you've mentioned. Check the commonly asked questions thread for links :wink:

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Help Needed - wrists and hand

Postby aheaps » Wed Jun 11, 2008 5:12 pm

Just wanted some advice.

My left wrist and hand have ben swollen for about 4 days now (after loads of clicking and cluncking in my wrists and shoulders.)

I visited my GP 3 days ago who said is was just down to my HMS! Later that day I had to attend A & E as I lost the feeling in my little fingers. I was there 5 1/2 hours :( Whilst I was there my had went completely into spasm (nurse told me) and looked totally deformed. To be honest I though I had disslocated it or something as it was that mis shapen. Spasms finally calmed down and fingers went back into place with a bit of a clunck. I have also lost most or all of the sensation on the little finger and ring finger.

Nurse told me that it was the unlar nerve being somehow effected and that they could do nothing for me there! Told me to go back to GP and ask to be referred to Rhumy to find out what it going wrong. Advised not to strap it up or anything as they didn't want it to seize up and try to rest it and elevate.

Went back to GP that same day and GP has finally referred me back to Rhuemy. Looked at hand tested reflexes and proded me with a pin to test sensation, which I couldn't really feel on left wrist and also on the left side of same hand and the two smallest fingers.

It has been 4 days now of swelling and is getting no better, infact the swelling is now on my hand at the side where below the little finger. I am in loads of pain and painkillers are doing nothing.

Just wondering what to do? Hospital say they cannot help and doctor is basically waiting for the Rhuemy to do something. Any sort of movement seems to make it worse and more painful :cry:

Any advice would be great as I don't know how much longer I can put up with it. Don't want to do more damage or anything if I just try to ignore and wait for Rhuemy appoitment!

Thanks

Claire
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