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Ehlers-Danlos Support UK
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Pain in thumb joints and hands

Hi, I’ve been hypermobile since I can remember (my party trick as a child was to fold my fingers over each other!). For the past 15-20yrs the muscle at the base of my thumb has been gradually wasting (don’t know how else to describe it really?) and it’s become harder to pick things up using the pincer grip. The last 3 weeks have been bad- my hands are painful and the pain sometimes goes up my arm. Also, when I’m holding sponges/cloths and wiping surfaces etc my fingers will lock up. Here are a couple of pics to show what I mean.. Any advice? I bought a wrist/thumb support but it’s not helping, nor is the voltarol gel.. I’m diagnosed with CFS and Fibromyalgia but suspect EDS and am going to book a consultation with Dr Hakim.

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Hi Monsoon,

I strongly recommend you to book an appointment now as it takes 2 to 3 months to get one! I have a similar problem with my thumbs. I also have pain in most of my finger joints. I find I drop things now as my grip is weakened and my wrists give way. I use a hot water bottle on my thumb joints when the pain is really bad as the heat seems to ease it some what. Doctor told me that once you get a diagnosis of Fibromyalgia they blame everything on that. Its true the Doctors don't actively treat you other than pain killers and physio. I use compression gloves but I am seriously thinking of getting some finger and thumb splints made. It gets to the point that its quicker to say what doesn't hurt rather than state what does........I hope you feel better soon.

Gentle warm hugs.

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Hi Aishah, thanks for your reply- I’ve been using a heated bean bag on the joints which relieves it a little. I’m just waiting on hubby’s roster for next year so that I can book an appointment (want to make sure he’s able to come with me!). Should be able to book it in the next couple of weeks. Still debating whether to ask GP for a referral (obv I’d still pay) or just to bypass them completely and self refer. I guess I want to maintain a good relationship with the doctor and wonder if self referring might not go down very well!?.. By the way, are you the same person (Aishah50) who replied to me the other day?? x

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I am lol the mobile app uses a different login for some reason. I told my GP I was going private and she offered to refer me to a NHS Rheumatologist but I explained I didn’t want to wait months. Also told her he is the right person to go for a diagnosis. She was fine as she knows how bad things have been for me the past year.

Xx

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Haha, thanks for the explanation - I thought though the odds of two Aishah’s on here were pretty slim 😉. That’s good to know- i think I will see my GP.. x

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Hi, I'm new here... but it's comforting to read that others are in similar situations and I'm not insane and making all these problems up in my head.

I've passed EDS onto my daughter and desperately looking for answers. Looking into booking an appointment with Dr. Hakim as so many have suggested. Funnily I've also just bought two hot water bottles and have splints for thumbs and wrists.🌻

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Hi! I’m new here too, I don’t have an EDS diagnosis but I’m making an appointment soon to see Dr Hakim as I’m pretty confident I do have it. So, have you already been diagnosed with it, and your daughter too? My 7 year old son appears physically ok (good strong body and lovely arch in his feet) but my 5 year old daughter has a very small palate, flat feet and already has some visible veins on the back of her legs- just like I had as a young girl. She’s also very flexible.. Let us know how you go on if you see Dr Hakim 👍🏻

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Me too...these 2 links take you to photos etc i’ve posted here about the splints & braces i’ve found most useful...i hardly ever have to use NSAID gel & heat now i wear these regulary:

I wear these braces (on both hands) when the prob is under extra strain & causing a lot of pain:

healthunlocked.com/edsuk/po...

I wear these splints (on both thumbs) every day:

healthunlocked.com/edsuk/po...

🍀🍀🍀🍀 coco

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Hi there, that’s really useful info thank you! I wore my support in bed last night but it’s made no difference to be honest. I’ll look into these ones 😃

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Oh dear: this prob can we SO SORE at night...keeps you awake, doesn’t it?! Miserable ☹️

Good luck...please let us know how you get on 🤞😘

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Will do, thanks again 👍🏻

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Have you seen a hand specialist at your musculoskeletal service? It will be either a physio or OT. There are some exercises that you should be doing to stop the joint drawing in like that.

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Hi, thanks for your reply. No, I haven’t even seen the GP about it yet. But I’m going to have to because day to day it’s becoming more difficult!

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For what it’s worth:

I had been given hand exercises years ago by the nhs way before hypermobility awareness began to develop in the 1990s. These exercises never helped me...if anything, they made my hands worse

Then 10 years ago, a brill senior nhs physio at my big univ nhs hospital began to help me with my hEDS rehab after subluxations anywhere in my bod inc muscle strengthening etc.

Recently i asked him to review my hands’ hEDS issues...and he tried to find exercises i could do without aggravating my hand probs...basically, he gave up cause my hands are so extremely hypermobile that it’s impossible for me to do even the gentlest, slightest exercises without making things worse. So he recommended i stick with the braces & splints

I’m 64 now, by the way 😉

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Wow, that’s interesting to hear. I’m 41, though my body feels (and behaves) considerably older!

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Yes..i know that feeling well...mainly cause of my early onset comorbidities (diagnosed as an infant with systemic lupus, and then early onset sjogrens + Primary Immunodeficiency (hypogammaglobulinaemia), as well as a bunch of secondaries)

Living with Immune dysfunction (my SLE, SS, PID) and/or connective tissue disorders (my hEDS) does make us feel considerably older...eg in my 30s i felt more like i was in my 60s...now in my 60s i feel more like i’m in my 90s...BUT, the good news is that a brill NHS rheumy + a brill nhs immunologist + a brill gastroenterology clinic are finally helping me to feel better than i have since my 20s...and getting plenty of sleep + pacing activity v strictly means some days i actually feel my “real” age 😉

i find that conscientious lifestyle management + orthotics + my daily meds are making a big pos diff for me...this is all thanks to research finally getting far enough along to understand the needs of patients like us better

It is what it is...😘

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I agree completely, any exercises I've been given haven't helped or they caused problems in different areas. I'm 56 and had a very good muscular frame. Climbed the Everest Trek and was a gymnist as many EDSers were/are. Started to rapidly deterorate after my third child. I am so interested to hear how you all cope! 🌻

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Great to meet you: WOW: love your experiences! 👍🌟

Well Said. In my experience only the most senior & up to date & specially informed physios “get” cases like ours. Physiotherapy is just like other disciplines (eg nutrition & dietetics): there are specialisms within...so that certain physios know more about particular types of health conditions. It’s simple. 🤷🏼‍♀️

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Barnclown, did you find it easier to find specialist specialists after you saw Dr Hakim?

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I haven’t seen hakim, but i know others who have. My diagnoses are via cambridge physios + consultants @ addenbrookes in cambridge

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Barnclown, have you hd a bpne density test? I had breast cancer so I'm unsure if I've been referred becaise of EDS or cancer 🌼

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Could well be due to both....yes, the nhs had to investigate me from an early age due to family history of osteoporosis+ early menopause + early onset inflammatory immune dysfunction illnesses. 2 years of 3 yearly dexa scans proved my rate of loss of bone density was too fast. They tried me on oral bisphosphonates which aggravated my GI conditions. So now i hav3 IV zoledronate every year. Hope that helps 🙂

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I feel like this test may shine a light on some of my structural problems.

I also have GI condition, really suffer when intestines flare up, sometimes up to two weeks which leaves me with low vitamin levels. Having B12 injections, which funnily all nurses say "this will hurt" but as you can imagine is No Pain at all in comparison to daily pain. Have you had any form of help in this matter? I've seen dietician, lovely but no new information that I hadn't researvhed myself. 🌾

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V much feeling for you. Yes, my lifetime of systemic lupus etc means i’ve had to devote a lot of care & attention to gastrointestinal matters via slef help + establishment health systeminvestigations& care. Will add links to posts here on forum that explains more 🤸‍♀️

healthunlocked.com/edsuk/po...

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And the other hEDS link:

healthunlocked.com/edsuk/po...

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It might be possible to self refer rather than go though a GP. Some areas do that. If your's doesn't then see the GP and ask for a referral to a hand specialist.

It would be better to go straight to physio/OT rather than try to get a diagnoses of anything first. Because regardless of the diagnoses, the physio will be the same.

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Wow weird my thumbs look exactly same... i used to have pain in them.

I also get pain in jaw joint, hip joint, knee and sacroiliac ... spent alot of time in physio or chiropracter but i saw a physio who said “ have u tried connective tissue supplements and inflammation supplements”.

So about two months ago i got msm, coq10 and glucosamine and started them top amount to start with..

Well within a month i could feel difference. I gave up all imflamtory foods ie gluten.. and some dairy and the difference is pretty exciting...

So are u taking things to help ur tissue and muscles?

It may help and not painkillers or ibuprefen

As that can do the total oposite make ur joints more inflammed

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I’ve had M.E (cfs) for 24 years (since age 17) and Fibro was mentioned about 5 years ago but the GP said ‘there’s nothing we can do for it so there’s no point in referring you’. Anyway, over the years I’ve also been to chiropractors, osteopaths and physio with various back issues- mainly the lower back (sacroiliac) and the neck. Aged 16 I was still dancing and the X-ray the chiro took showed the bones of a 40 year old. They told me I was hypermobile. I had steroid injections aged 20 for the pain in my bunions (I also have flat feet and plantar fasciitis) and s deviated septum. It wasn’t until about 5 years ago that I really connected the musculoskeletal issues with the chronic fatigue, IBS, anaesthetic issues etc. I’ve tried so many complementary/alternative medicines over the years and so called ‘cures’ and it’s made me skeptical in my old age!! The one thing that does help is massage. I’ve been going for monthly remedial massage for 2 years and i really feel it helps. I’m going to get this all looked into. I’ve spent the last 8 years concentrating on bringing up our kids and put my own health on the back burner!

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Hi there i actually had an operation on one of my thumbs through the nhs around 19 years ago, they took some bone out of my wrist to replace thumb lower joint it really helped with grip and pain worth looking in to. Goos luck x

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Oops good luck x

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Thanks for the info- glad it helped 😃

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Hi, I'm new here but not new to EDS. I have the exact same problems with thumbs and wrists. I use a splint from the rheumatologist, it has a support strip on the inside and wraps around the wrist. He did say he doesn't understand how it can work... but it keeps the joint from popping out. I'll take an pic and send it to you. Maybe it will help you. 🌻

Now right elbow is starting, which makes using walking stick difficult.

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UPDATE!! I decided I would approach the GP and put the EDS thought to her rather than just go straight for a self referral to Dr Hakim. It went really well 👍🏻. She agreed my symptoms certainly made it sound likely, but before she would refer me she wanted me to see the visiting musculoskeletal physio nurse. Saw her 2 days later and she confirmed that I’m definitely hypermobile, she just ‘got’ the whole fatigue thing and explained how people with HM use around 50% more energy doing even simple tasks like sitting down, standing up etc than ‘normal’ people, because our muscles have to work much harder to support our unstable joints. She knew of the Hosp of St J & St E as she had completed some of her training there. She’s referred me for physio and asked for someone who has some knowledge of JHS. Also, the GP has already written a referral letter for me to see Dr Hakim. I can’t tell you what a relief it is to feel like I’m getting some answers after all these years! Thanks for all your advice on here- fingers x’d I won’t have to wait too long for an appointment...

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