I'm new here joined yesterday. I've been searching the internet for a support group and I found it very difficult.
I have constant hand pain in both hands along with weakness and I'm 29. This developed started in March 2018 when I was 28 and has just got worse.
It feels like extreme aching in the joints and burning. It's hurts so much the more I use my hands, first thing in the morning like I've been clenching my fists all night and from the afternoon onwards become more painful.
Since march 2018 I haven't had a day without pain and its awful. I have a 2 year old and would love another baby but I'm seriously considering I can't. I'm currently on 20/30mg amitriptyline, naproxen 500mg, omeprezole and cocodamol for when it's bad.
I've been through testing at Rheumatology and she said she couldn't find anything and has 'given up'.
I'm honestly just fed up and giving up myself. I know I'm not in the worst position compared to others but i didn't realise how much having my hands not working properly would affect me.
Any advice truly welcomed. On a side note I do have pain in my knees too quite similar but not constant.
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Kitkat229
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I also forgot to add that when the pain gets worse I start to shake, particularly in my right hand. This heat has brought on such extreme pain (I live in the UK). I cried myself to sleep last night in pain even after taking a cocodamol.
No I haven't I just got referred to Rheumatology and she said that's not her area because my mum told me to request one (she has lots on illnesses one being Raynaud's disease) I have alot of family history of autoimmune disease.
It has now gone back to my doctor who said he doesn't know where to refer me so I've got an appointment with the musculoskeletal specialist team and then they will advise where to refer me for further investigation.
The one thing my rheumatologist said is that I don't have carpel tunnel because I don't get any tingling or loss of sensation. I don't know how true this is.
I see. Sometimes you have to investigate yourself and asked to be referred. However I presume you are with the nhs. In Ireland, to get anywhere you have to go private. The public system is a joke.
Hopefully this clinic will help and advise.
Have you tried gentle exercises even for your hands?
Thank you, I did say to my doctor maybe we should investigate the nerves in case it's neuropathic pain seeing as the amitriptyline helps but he still didn't want to. Doctors do not listen to me unfortunately, I think it's because I look so young.
Even now typing this hurts my hands, im just so fed up.
That's crazy! We do have private healthcare with Bupa at work but I've only just filled in the application to see if they will accept me.
Yes I was referred to a therapist who has given me some and equipment, however it just causes further pain and distress.
Thank you for responding 😊 it does really help talking to someone
I had an ultrasound and the guy said my joints are perfect no problems even as he did the scan I was crying with pain, it hurt so much. I also had normal x-rays early on and again all okay.
I had lots of blood tests the only thing she was very slightly concerned about was that my calcium was lowish but in the November before I suffered with a really bad kidney stone so I was slightly confused but she said its not enough for her too look into plus she didn't think it came under her remit.
Unfortunately my mum and sister have an array of disorders and diseases and I'm so worried about taking the same path.
I am really sorry. Do they have same symptoms as you?
I think I would ask for emg once your Bupa insurance gets approved. See what this clinic says..some times neck pain radiates to hand but you havent mentioned any neck pain.
Do any of your family have hypermobile joints, fragile skin or slow to heal wounds? Ehlers-Danlos, especially the hypermobile type, is often misdiagnosed as fibro. Have a look at the EDS website and the RCGP Toolkit to see if that is a possibility.
LeighBlyth the reason I put I don't usually is because I still believe healthy people will get such things as headaches ect so having one once a month I wouldn't include as part of my symptom. Unless this is the wrong? I don't know it's hard understanding what's normal or not.
johnsmith yes I husband is looking into getting me in with a chiropractor and see if they can help, it's worth a try.
cyberbarn thank you for your suggestion, no one in my family does as far as I'm aware. The rheumy looked into this and she said my joints are of normal mobility and I don't have stretchy skin. My sister and mum have been diagnosed with fibro I'm hoping it's not this.
I have my appointment today at 12 with the musculoskeletal specialist, any tips? I need to make a list but since my hand pain I struggle with my memory or clear thinking I just guess this is a secondary of the pain and tablets
I hope the musculoskeletal specialist can be of help.
With unexplained pain then all your pain should be noted to see if there is any pattern or connection. Our body whole is interconnected so pain or problem in one area will have knock on effects.
For example the muscles in your forearm extend to your fingers (as tendons) so if there is tension/spasms/trigger points in these muscles then it can affect the hands. Upper arm/shoulder/neck problems ditto - any issue "upstream" can manifest in the hands so it's important to consider how your whole body is functioning.
Chiropractor/osteopath and massage therapy all worth exploring. Acupuncture is another possibility - again they should look at the whole.
I've my own theory (based on my recovery) about much of the pain associated with "fibromyalgia" and that it can be released learning to use our body correctly - have a look at my other posts for more information.
Close your fingers around your thumbs and then flex your wrists up and down and left and right. Is that more painful when you do that? If so, you could have De Quervain's tendinosis. I had so much pain in my right hand that I stopped doing most things I love. And I was becoming unable to do necessary things as well. I had the surgery to release the tendons and I'm back to my normal self (no one EVER calls me normal, though). It's a thought. I had tremors sometimes, too, which made me think you might be experiencing something similar.
Hi kit kat I suffer bad with my hands but I put it down to my fibro. Hope you get help. Are you palms very red. I think we could all do with putting in a bag and shaken lol x
I have the same thing. Feels like my circulation is being cut off at the wrists. My palms burn and turn beet red. Have gone for nerve testing 3 times she recommended carpal tunnel surgery but I don't even see anyone til next June. My hands are weak can't lift much weight. Have a hard time doing fine things like holding onto $ or bank cards etc.
Have hard time with buttons, zippers and meal preparation.
Kitkat, from the list of diseases your mum and sister have, it looks like their diets are quite bad. What is your diet like? Lots of detail if possible.
I don't if this will be of any use but there is two that my hands badly. The first was Gout Which I take a tablet for, I didn't know you could get gout in your hands until it happened. The second is repetitive strain injury which I got after doing a job that hurt my hands during the day it only took a year to damage them. I have to be careful with my hands now or I end up in a lot of pain and I can't even hold a pen for a couple of days
I've had burning tingling numbness and painfull hands for 3 years now and 6 months into having this I had alot of different tests and showed nothing and two weeks later the same pain burning and tingling developed in both feet. It's burning and tingling 24/7 even though I take a few different meds for it. When I have flare ups which is alot of the time it hurts when I apply preasure to my feet and my hands so can't walk or touch.. I'm at this moment waiting for an appointment to see a neurologist as doctor thinks it's maybe never damage.. the burning is so bad at times I need ice packs to help numb my hands and feet to the pain and I know I'm doing more damage but it's the only thing to help get some relief... I also have Hashimotos disease hypothyroidism low b12 and Vitamin D and deficient in folate and ferritin which I'm trying to get sorted as these symptoms could well be down to these deficiencies and borderline deficient in b12 vitamin D
Apologies for my absence just had a lot going on and with the decline in my memory I forgot to come back on here!
I went for my appointment with the musculoskeletal specialist and I was physically examined. So he doesn't want to make me go through rheumatology again which is good but he said it has been a year since my last tests.
So I've had a few blood test and going for an MRI on the 11th September. Once he has back both test results he will assess what to do then.
So the pain seems to be increasing quite intensely especially when it's quite hot or quite cold, running my hands under a hot tap seems to help and makes my hand feel slightly numb almost but I can still feel the aching and stiffness.
So at work the other day I had to write something down (which is quite painful for me) after this I tried gripping my mouse, I bent my index finger and it felt like a bolt of lightning into my finger. I tried bending my finger again and it happened again. Extremely painful. By the night time it had subsided but the overall pain in that hand was horrible. At this point I have to take cocodamol to help alleviate the pain a little.
I'm hoping I'm getting closer to an answer now. Maybe it is my nerves or a nerve condition.
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