Anyone had hand therapy for Chronic repetitiv... - Pain Concern

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Anyone had hand therapy for Chronic repetitive strain injury of the wrists?

67 Replies

My question is has anyone ever had hand therapy for chronic tendonitis or like a chronic repetitive strain injury in your wrist? And if so did it help with the pain? This is the only thing that I've not tried besides obviously I've not tried surgery and I asked my orthopedic hand dr about it and he doesn't want to do anything more at this point because he feels like he doesn't know what to do so he told me just to get a second opinion from like a big hospital or something else and I wasn't expecting that and I don't know of any specialist out of my state anyway. So I'm not sure if I should just ask my back doctor to give me a script for hand therapy which he'd be willing to but he's not a hand dr and I don't want to do anything that's going to worsen the pain in my wrist and I don't want to do anything that would worsen my CRPS / nerve pain disorder...

I have told my story here before but as an update I have had a chronic repetitive strain injury / what feels like tendonitis pain in both wrists and hands and arms for over 5 months now. I have tried steroid injection and it didn't do anything to relieve my pain and I've even worn braces and take an anti-inflammatories and it didn't relieve any pain. What complicates this further is that I have complex regional pain syndrome CRPS also known as RSD. It's a nerve pain condition that is the result of an injury and it thrives on if you enter yourself it makes the nerve pain even worse.

Any advice or stories of anyone who has had physical therapy for your hands please let me know. Thanks to all!

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67 Replies

Hello a friend builder I have had what was called tennis elbow he was in agony he had physio therepy and it's fine now but yours isn't that so I'm not sure I would reaserch I do have repetive strain in my thumb from work and DIY, I just don't over use it but there are various exercises you can do my mam has same but worst she was given a thump support thing to use but doesn't as it was wrong size there should be something you can get, and she asle was given some exercises which helped, sorry I can't really help hope you find some reprieve 🤗

in reply to

Thank you. I hope I find some relief too. I don't know if I should do hand exercises or not bc I don't know what to do and I don't want to make anything worse? I don't know what to do...

in reply to

Hi I guess just reaserch more maby try some other sites on here arthritis or other pain ones

in reply to

Okay thanks anyways.

timbowPSP profile image
timbowPSP

Yes many times. I was a Bowen therapist - many scattered across the globe. The Bowen branch of NST (= Neurostrutural Integration Technique) is most effective for Carpal tunnel, RSI and more. Can you locate a practitioner? Good luck. TimbowPSP

in reply to timbowPSP

No I've never heard of that? Is that the same as if I just went to hand therapy? Like physical therapy for my wrists? Do you think physical therapy like hand stretches( pulling wrists back and forward, etc) would be good for a RSI in my wrists for tendonitis like pain or would that hurt it?

I first tried hand stretches like this that I got off the Internet for if you have carpal tunnel and at first I thought it was helping but then the pain worsened( I was doing them probably too often like twice an hr every hr) so I didn't know if it was due to the stretching exercises or just due to using my wrists period? So I actually thought that may have been what set off my wrist pain/ injured my wrists (although the pain was there before doing the exercises). So I stopped doing the hand stretches for over 3 months and it still didn't make the pain go away nor get any better. Nothing has. I've rested my wrists while wearing wrist braces( which helped done while the braces are on but I can't stand to have them on long for many reasons) and taken antiinflammatories and nothing has worked.

So now I'm wondering if I should go to hand therapy and see if they would recommend hand stretches and if they do I don't know if I should do them or not since I'm not sure if that made them worse in the first place? Or is that just what I need, the hand/wrist stretches? What do you think,?

timbowPSP profile image
timbowPSP in reply to

Hiya P.G. I know nothing of hand therapy - is it some kind of massage? Bowen, and the more advanced NST is stand-alone stuff and is very deep-acting. For instance carpal tunnel syndrome is fro inflammation of the carpal band, and can be alleviated by work on the muscles of forearm. It's not arthritic. Try googling' nst therapy bowen technique' ---- see if that gives you some ideas. Keep asking around, me and others! Timbow

in reply to timbowPSP

Okay thank you. Well the place that I go to for physical therapy on my back and where I've also seen two hand Doctor / hand specialist / surgeons say that I do have mild carpal tunnel but that I don't have any tendonitis or tendinosis although I do have severe complex regional pain syndrome. So for me they have not suggested going to hand therapy but from what I've read from online it looks like a lot of people get benefit from going to physical therapy for your hands if you're having like tendonitis that won't go away. So I considered myself in that category but when I think about what they'll do I think they would teach me different sorts of hand stretches to do for like my hands and wrists and I don't know if I should do that or not because part of me feels like I've I tried that back when the symptoms were first starting and at first I thought it was helping but then again like I said I was overdoing it-like several times an hour several times a day and so I don't know if that's what made it worse but after that the pain got worse so like I said it helped at first, but then it made the pain worse and that may have just been because I overdid it but after that I took like 3 months off where I didn't do it at all and now I don't know if I should try to get a script for hand therapy and if they were wanting to do the hand stretches allow them to do the things like pull my wrist back pull my wrist forward things that you would do that I saw on the internet. Or if I should just continue to not do any sort of stretching for fear that that was what perpetuated the injury in the first place and made it worse in the first place?

timbowPSP profile image
timbowPSP in reply to

As an ex-practitioner, I can treat what is in front of me, but I am not clever enough to suggest therapies for a condition that I cannot assess personally. What does your own intuition tell you? It can be a handy guide. Or pick up a pendulum and start dowsing ..... something else I use. Best Tim

in reply to timbowPSP

You're right maybe I should listen to my intuition and my intuition does say that I am fearful that it could make the wrists were so yeah I probably shouldn't do the hand therapy / hand stretches.

However I wonder if there's anything that they could do that is not stretching related? Maybe I could call the physical therapy place that does the hand therapy and ask them what sorts of techniques they can do for someone with tendonitis like pain? Then I could decide whether or not I would want to pursue that. And then as far as the weather or not I should resume the back exercises that has the resistance bands I already know that I'm not going to do any more weightlifting but if they were to say that the resistance bands would be necessary for me to strengthen my back then I guess I'll have to try it and hope that it doesn't make my rest any worse but if I don't need to do it then obviously it would be best if I could avoid it. Like I said it's confusing when the doctors say we're not really sure one way or the other just let pain be your guide because unfortunately once you do it it's too late like if you already injured yourself so I'm trying to see how I feel because part of my intuition says you need to go back to the therapy for your back with the resistance bands but part of me feels like I don't want to hurt my wrist any further so I'm just not sure what I'm going to do. Thank you for your advice.

in reply to timbowPSP

Do you know what hand therapy would consist of? Like if I were going in and I said I'm having tendonitis like pain that will not go away and I do have mild carpal tunnel but the majority of my pain is tendonitis like even though there is no tendonitis on the MRI what do you think that they would do for me? Would they like massage it or be able to do any sort of stimulation or anything that would give me any sort of pain relief?

timbowPSP profile image
timbowPSP in reply to

I've no idea what your practitioners do over there. Your intuition says anything to you? Or your dowsing? T

bookish profile image
bookish

Hi, I was diagnosed with RSI nearly 24 years ago and did the anti-inflammatories and steroid injections like you, then 12-14 years on pain meds, exercises (briefly also pain psychologist). Slowly stopped meds as knew it wasn't really helping and although some symptoms better, some getting worse. I also have fibromyalgia. Recently diagnosed with small fibre neuropathy, which can have a number of causes, and neurologist says that my RSI was SFN all along. Family has a long history of vit B12 and folate deficiency (cellular, metabolism issue, in which serum B12 and/or folate can be low, medium or high in range). I found that an undiagnosed gluten disorder had also made me very low in nutrients, so getting vits and minerals to good levels made a vast difference. Some of the meds were depleting the vits and minerals that I was already low in, so that kind of made the whole thing worse, even though I did get some benefit short term for the pain. Magnesium for me was a game changer. Try to get really good vitamin and mineral testing (not easy, especially for the B vits, but explaining that would take an epic message!) and see if you can gently top up where needed. Might not resolve your underlying vulnerability but might/should improve how you feel. Best wishes

in reply to bookish

Thanks. I've already been tested for vitamin deficiencies etc and even went to a rheumatologist a couple yrs ago when I wasn't having wrist pain and got tested for anything else like autoimmune and no problems there either and no thyroid issues either. and although I'm anorexic and have been for yrs they don't think that has anything to do with it bc I've been as anorexic for over 27 yrs. The only thing is I do have Reflex sympathetic dystrophy RSD/ CRPS complex regional pain syndrome which is a chronic nerve pain disorder that causes extreme nerve pain and occurs whenever you injure yourself. So I realize that's worsening whatever pain I'm already in. But I can't figure out what set it off other than increasing the resistance bands for p.t. they were doing for my back( you pull the bands with your hands- like they increased my repetitions rapidly and put in hand weights which I'm not used to doing. I was doing just fine when we were doing the resistance bands for like 20 repetitions three times a week but then when they upped the strength out of the weights and moved the repetitions to twice that up to 30 then that's when the pain started getting worse at the same time as when I started doing the hand stretches so I didn't know if all three of this set it off but my point is now I don't know whether or not I should go back to doing the back exercises with the resistance bands at a lower intensity which the doctor said he feels I could try it and let pain be my guide. But I just don't want to make anything worse with my wrists and so I'm afraid to try it, but I'm afraid that my back needs to those back exercises as well.

Also I don't know if I should try to get into hand therapy and see if they can teach me any hand stretches or if that would make it worse because like I said I've tried the hand stretches and I don't know if that worsen the pain in my wrist or if that was just already there and the stretches didn't make any difference but I didn't know if that was injuring them or if that would be helping them. What do you think? What would you do if you were me?

bookish profile image
bookish in reply to

If I were you I'd stop doing the far too often and too heavy weight exercises to see if you can get your hands to calm down before even thinking about starting again, much more slowly and cautiously. But unless you had those vitamins and minerals done privately you will not have had sufficient tests to rule out deficiencies, especially at cellular level. I'm on my 3 rheum and it wasn't until I'd had neuro symptoms for 19 years and was losing feeling up to my knees that a rheum grudgingly sent me to a neuro who actually tested me. So don't assume that you've had all that is available. Things like Sjogren's are notoriously difficult to diagnose, as are other autoimmunes/autoinflammatories, including linked ones like EDS/MCAS

practicalpainmanagement.com...

Even standard thyroid testing cannot be relied on to pick up low levels of thyroid hormones.

in reply to bookish

Well like I said I stopped doing all of the physical therapy exercises with the resistance bands and I stopped doing all of the hand stretches both of them for about 3 months trying to get everything to calm down. So during that time I wore the braces and took the anti-inflammatories and tried to get as much rest as I could to my wrist. But now that it's been another month and I'm still not seeing any difference the doctor told me to not wear the braces anymore unless I wanted to. And he just said let pain be my guide on everything. So now what I was wondering is since the pain doesn't seem to be getting any better in my wrists and hands and arms I didn't know if I should try to go back to doing the exercises with the resistance bands for my back sake or I didn't know if that would make the pain worse in my wrists? Like I said he just says let pain be your guide and I don't know if I should try doing it or not?

And then the thing about the hand therapy ...I know that they would try to like get me to do hand stretches and like I said I know that I overdid it a few months ago but I've not done any stretches for about 3 months, and now I don't know if I should try to go there and let them do that for me or I don't know if that would mess things up as far as making my wrists worse?

If you were me would you try to do either the back exercises with the resistance bands or would you try to do the physical therapy / hand stretches for my hands or would you do one or the other or both or what?

in reply to bookish

Also I will try to get into a rheumatologist but as you know getting a new doctor is very hard to get into. I guess I just don't have a lot of hope that they're going to have anything to say because I don't think they're going to find anything rheumatologically wrong with me as far as autoimmune however I could get it tested again even though I did it like 2 years ago and everything was fine, but it wouldn't hurt to rule it out. Also I go to my general practitioner in a couple days so I'll ask him if he could do any sort of thyroid tests on me. I'm going to an endocrinologist tomorrow but that's more so for me to get my hormones checked as I have severely low estrogen due to my anorexia which is causing me severe hot flashes so they just started me on Hormone replacement therapy to try to at least supplement my body with the estrogen that is not being made. I wish it were just as easy as oh the lack of estrogen is what is causing the pain but I've read up on that and there isn't any sort of evidence that shows that that could be causing anything like this.

in reply to bookish

I guess I blame everything on the crps/complex regional pain syndrome/rsd because I know that that thrives on injury and it makes everything worse so I really feel like this is where everything is coming from because I just do but I don't know if it's ever going to let go of the pain.

bookish profile image
bookish in reply to

Try to stop blaming it all on that, even if it is the cause there will still be plenty that you can do to help how you feel, but I would recommend that you get active in your treatment. Get copies of results for what has been tested, look at them, find out what it all means and get some advice on what might have been missed. Believe me, taking some control back will make you feel like you are on top of the world. Being a passive patient is the worst and you already have no confidence that they will find something. If the anorexia is enough to have messed up oestrogen levels then why not nutrients, vitamins and therefore neurotransmitters? Ask endo to check thyroid if you are seeing one, why wait and ask GP who will be able to do less tests anyway. You are going round in circles, listen to what your body is telling you. Best wishes

in reply to bookish

Ok thanks for your advice and help.

bookish profile image
bookish in reply to

Sorry, not trying to sound hard or uncaring, I just found from my own experience that medical support was a bit thin and I only got better advice when I knew more questions to ask. Now they tell me I did all the right things, but none of them suggested them to me at the time. You might find some breathing exercises or meditation help keep you calm and centred, whatever you find that helps you relax, and supplementing magnesium shouldn't be a problem as rarely tested anyway and most are deficient. I use a magnesium spray on the skin (not on unbroken skin, not near eyes and start slowly with not too much to begin with, best at night as it helps you sleep).

in reply to bookish

No you don't sound uncaring. You sound like you're trying to really help me and I really appreciate that. I totally agree with you that getting involved in your treatment is the best thing to do as I often have had to push for things that my intuition told me that doctors told me nothing was wrong and I knew that my body was telling me that something was wrong like when I knew that I had crps/rsd and they kept telling me oh no you don't have anything it's normal for you to feel more pain after an injury and I'm like no something is wrong I just don't know what it is and luckily an old doctor that I got in contact with told me to look that up and was like I'm positive that's what you have and it was, so you're absolutely right. I feel like I am fighting for help ..I just don't know what exactly is wrong other than the RSD and of course I know that I have anorexia so I know that. Meaning that I'm probably deficient in a lot of things because of the anorexia I'm sure because I'm malnourished but I don't think any of those things are causing pain. They never have before and like I said I have had anorexia for 27 years and I am 39 now and I do know that it is made my health worse as I've gotten older but like I said none of those things have ever caused pain and I've even been at lower weights than what I am now.

I'm also nervous that if I push the doctor like my primary care or the endocrinologist too much to look into if I have any other deficiencies that that might cause them to find blood work that I wouldn't want to that might get me like hospitalized and I definitely don't want to do that as I need to be able to stay out of the hospital and out of treatment centers so that I can get my evening shots for my osteoporosis what you have to get once a month and you can't do that if you're out of treatment center or in the hospital.

bookish profile image
bookish in reply to

Hi, just part way through a reply and computer crashed so lost the lot! I was just saying I absolutely understand that you would not want to push and end up hospitalised and with even less control. Any chance of testing privately? You are doing really well and it is not easy to have to keep fighting for yourself. Glad you had a decent doctor to help at one point x

in reply to bookish

No I can't get tested privately. Yeah I don't have that doctor anymore as she was my eating disorder specialist doctor when I was 14 but I just reached out of her and desperation when I was 21 and diagnosed with RSD. But like I said I can't reach out to her anymore and she's no longer my doctor bc she works at children's hospital and I'm 39 now.

in reply to bookish

I have never heard of magnesium in a spray. Can you tell me what you use? I have heard of taking magnesium for pain and for if you have trouble sleeping which I have both of those things but I know I didn't know which type of magnesium to take as I know that different ones are for different things I need the one that's for anxiety and sleep and pain?

Yeah the problem is I know that my anxiety is making me more anxious and making my pain worse and it makes all of my other conditions worse and I'm on a pain medicine a sleeping medicine and lorazepam(Ativan)for anxiety but the problem is I have a generalized anxiety disorder and severe OCD so for me nothing makes me feel calm or relaxed or able to get my mind off of my problems because so much is wrong and nothing is going right with my body and I'm in so much distressed with these hot flashes and not enough sleep and severe pain. The only thing that keeps me going is my faith and personal relationship with God which is the only thing that I can focus on and have hope in since I can't put any hope in doctors or medicines or anything. And the support of my elderly parents who are both in their 80s which is why I fear a lot because they take care of me and I always worry what I'm going to do when they're gone as I'm highly dependent on them because of my poor health. I just got on Hormone replacement therapy which I'm hoping will kick in and hopefully that will help my sleep and take my hot flashes away since they feel that is the cause of my hot flashes but I don't know. I'm hoping my Tramadol nor RSD isn't causing me to feel hot as I can't get rid of either of these things. I'm sorry to go on and on. Thank you for all your help and advice. I really do appreciate it.

bookish profile image
bookish in reply to

Your faith will support you through this, I am certain. I wonder how well you are methylating with anxiety and anorexia, could be a COMT issue. Has anyone looked at neurotransmitters? Hopefully the HRT will be the right one for you, as there are options, and it is impossible for doctors to predict interactions between medications when you are taking a few, so that may complicate things.

in reply to bookish

Yes my faith in God is what has got me through everything I've gone through in my life which is a ton from everything from anorexia to osteoporosis to severe kyphosis of the back to chronic pain full body, etc. What is a COMT issue? I hope the HRT will work too for my hot flashes and feeling hot all the time bc I'm dying with hotness.

in reply to bookish

I'm looking back to your story and wondering when you got diagnosed with small fiber neuropathy instead of RSI were they able to give you anything to help take your pain away( like the pain in your wrists and arms like me)? That is where your pain was located correct? Or is the magnesium supplement what took away the pain? What kind of Dr could test me for all these things? My PC Dr or a rheumatologist or Endocrinologist or neurologist,?

bookish profile image
bookish in reply to

Yes, pain started in right elbow, moved to right hand and wrist then left (whole arm), but feet also slightly involved. Bizarre neuro symptoms, skin crawling, burning, electric shocks etc etc. I had years on tramadol, gabapentin, amitriptyline, citalopram/venlafaxine, slowly came off all, one at a time, changed diet, sorted supplements and calmed lifestyle. Magnesium made a big difference, and methylfolate (form of folate/folic). ( swintegrativemedicine.com/b... )

Pain wasn't so bad by time of SFN diagnosis, partly as too numb to feel some of it! Also was reacting to foods/chemicals/meds so don't take anything -just very clean home cooking and supplements, no avoidable chemicals in house or on skin. Hard to say which doctor, you just need someone to talk to who will look at the bigger picture, but not sure if conventional medicine can do that. Doesn't here anyway. Used a functional practitioner and private at home testing. My magnesium is chloride - betteryou.com/collections/m...

but I know there are a lot of different ones and you may get better results with others. This one just works well for me. (I have slow COMT and other SNPs which can affect B12/folate metabolism, but COMT is a magnesium dependent enzyme.)

in reply to bookish

Wow.. okay thank you. I'm glad that they were finally able to figure out what was wrong with you and I'm more glad that they were able to give you relief in your pain. I hope they will be able to do that for me.

bookish profile image
bookish in reply to

I very much hope that you will get some relief. But the 'they' in my case was all me - the meds were making the problem worse as I'd been misdiagnosed, and the underlying issue would have been reversible if treated sooner. Functional medicine gave me pointers for things to try and things to check, after a lot of research and questions on the forums. Magnesium works on the same receptors in the brain as gabapentin and actually helps the body work better, without depleting folate and possibly B12. Best of luck x

in reply to bookish

Well I'm glad you're doing better now. Thank you for all your help and advice.

bookish profile image
bookish in reply to

Me too!! It was getting bad a few years ago. You are more than welcome x

Batty1 profile image
Batty1

Sorry your feeling crummy…, Have you tried physical therapy ? And Maybe seeing a Rheumatologist would be helpful.

in reply to Batty1

Thank you..they already said it's not anything rheumy like no inflammation showing on MRI nor x ray.I have not tried hand therapy(physical therapy for my hands.) I have tried hand wrist stretches that I googled off the Internet for if you had carpal tunnel. It was like where you pull your hand back and hold it, then pull it forward, etc. I tried this like 4 months ago for about a month when the pain started and at first I thought it was helping,but then the pain worsened and I'm not sure if it was due to the hand stretches( I was doing them like every hour all day long so probably way too much). So I my mom told me I should stop as she said she thought that was probably what caused the pain in the first place, she thought that's what injured it so I stopped doing all hand stretches over 4 months ago and the pain still never got better.

So now I don't know if I should ask to go to hand therapy(physical therapy for my hands where they would probably teach me hand stretches like these) or if that would injure my wrists more? Would you try this if you were me?

The Dr didn't know either so he just said to get a second opinion from another orthopedic practice as I've seen two drs here at the same facility that don't have any answers nor help for me. I just don't know what to do as I don't know if I should try to get hand physical therapy or if the hand stretches would hurt my wrists?

Batty1 profile image
Batty1 in reply to

If you have tried physical therapy and 2 ortho doctors and none of this has helped…. I would seek out a rheumatologist and go armed with MRI and Doctors notes …. Its definitely not normal after having all this intervention and still be bad off.

in reply to Batty1

Okay. thank you . I guess I couldn't hurt to get tested again even though when I got tested a couple years ago they couldn't find anything rheumatology wrong with me at all. And my MRI and x-ray showed that there was no inflammation so the doctors don't think that it's anything like arthritis or anything. Well would you also try to go to physical therapy for specifically for the hands and see if they can try to teach me any hand stretches that would be good or do you think that that would injure the wrists further since I've kind of tried that already? Part of me is desperate for relief hoping that maybe that would help but then part of me get scared that that might injure it further as I don't know if that's what injured it in the first place?

in reply to Batty1

I guess I blame everything on the complex regional pain syndrome CRPS as I do know that that makes everything worse.

Batty1 profile image
Batty1 in reply to

Do you have family history of psoriasis? I have Psoriatic Arthritis and it affects the tendons in my body (Enthesitis) its like having tendonitis x 100 …. It’s horrible. Just because you were negative for Arthritis couple of years ago doesn’t mean you wouldn’t have it now and honestly most test for Arthritis aren’t 100%….. I would question the increase pain.

in reply to Batty1

No family history of rheum probs. my mom and sister have arthritis but it is the osteoarthritis and me and my mom both have fibromyalgia. But I didn't think that if I was negative 2 years ago I didn't think that there could be anything rheumatologically wrong but yeah I will try to see if I can get into the rheumatologist and get retested since there's nothing to lose. I'll just have to find a new rheumatologist which I'm sure is going to take a while because the one that I went to before was nice but she didn't find anything wrong and she really wasn't helpful. Although she could run the test for me I guess. And some ways it's like you just wish that they would find something wrong so that they can give me a treatment and make the pain go away but what's frustrating is they can't seem to find anything other than mild carpal tunnel which doesn't explain the extreme tendon pain and of course we know that I have CRPS which is why I'm blaming it on that.

Batty1 profile image
Batty1 in reply to

Do you have Thyroid problems?

in reply to Batty1

Well I've never had any testing done but the doctor always checks my thyroid and makes me swallow and just says that I don't have any problems would he be able to check for that or what I have to go to an endocrinologist?

in reply to Batty1

Also I figured it wasn't anything arthritic because when they did the MRI and the x-ray they said that they didn't see any inflammation or signs of arthritis but if you're saying that the only way they'd be able to diagnose this is with specialized blood tests that are rheumatologist would do then I guess I need to go to a rheumatologist rule it out

Batty1 profile image
Batty1 in reply to

I wouldn’t believe that because I was house and bed bound for 2 years. I was unable to walk, open doors or get in and out of a car. …. Had more MRI and X-rays and blood tests then you can shake a stick at and was always told nothing was wrong from multiple Rheumatologists, Orthopedic Doctors and Foot specialists to no avail… After resigning myself to the fact I was just going to be crippled I decided to go for my daily 10 mile walk (Doctors told me to walk it off) I was 5 miles in the woods away from civilization when I collapsed from unbelievable pain I laid their for 2 hours in 34 degree temperature (walked this walk 100’s of times) it took me 5 hours to walk 5 miles (true story) ….. I went back to my Doctor which (I would have to show up 2 hours before my appointment) to just make the appt time. Something was definitely wrong inspite what these doctors/ test said…. And I was finally referred to university rheumatology department after complaining alot ….The University would have to review every test I had done along with medical notes from every specialist/doctor I saw …. I just died at that moment but it wasn’t even a week later I had appointment with PSA Specialist…. Moral of my story is you know your body better then any doctor or test and if your feel horrible it needs to be addressed by a doctor who is willing to think outside the box…had I not pushed for the University Rheumatologist I probably would’ve been wheelchair bound ! This is a snippet into my crazy pain battle… still struggle and probably always will but at least my struggle has a name now.

in reply to Batty1

Well I'm so sorry to hear about what happened to you. I hope you're doing better now that they have diagnosed you. I hope you're getting better now. I hope that I can get the help that I need. See the thing is I do feel in my heart that it's the CRPS causing all my pain. I mean I don't think that there is anything else wrong except for I just think that it's every repetitive strain injury that the CRPS is wanting to hold on to and not let go of so I feel like it's just chronic tendonitis even though they're saying that they don't see any tendonitis I feel in my heart that that's what it is but I guess it wouldn't hurt since I'm at the end of my road to go to a rheumatologist and get checked for any sort of autoimmune things just to make sure that it's nothing arthritic.

Batty1 profile image
Batty1 in reply to

mayoclinic.org/diseases-con...

Imagine1 profile image
Imagine1 in reply to

Hi, You are so right in blaming everything on CRPS. Operations or any injury makes it unbearable for you, you have to be so careful all the time and this Syndrome is so rare not many doctors know about it so can't treat it. Which is shocking because it doesn't help you or me dela with the [ain that we are both in. xx

in reply to Imagine1

Thank you!!! Yes exactly right. My hand surgeon even knows about RSD and thankfully he's the one to set don't get the carpal tunnel surgery because he was afraid it would make it worse but on the other hand he doesn't know enough about the disease to know what to do other than to tell me that he can't figure out what the problem is other than knowing that this pain won't go away but he couldn't do anything treatment-wise other than tell me to go to a pain doctor because he says that I'll have this repetitive strain injury for the rest of my life because of the RSD. I take Tramadol for the nerve pain in my full body RSD which usually works 100%, but with this repetitive strain injury nothing helps the pain of my breasts and hands and arms that's in my tendons:(

Imagine1 profile image
Imagine1

Hi, This is like reading a post about myself. I have exactly the same problems as you. I have problems with my thumbs which is Tensynovitis and I also have problems with my wrists and hands. I have Carpal Tunnel Syndrome though and because like yourself I have CRPS I was advised not to have an operation even though I was on a waiting list for 2 years. The doctor knew that I had CRPS and still told me not to have the operation, so why put me on a waiting list in the first place? Having an operation would make my CRPS worse and it wouldn't be worth it. like yourself I am waiting for Hand Therapy because the doctor doesn't know what else to do. I just wish I could help you but you are not alone with this and if you do find out what hand therapy is like, please let me know. Take care and I hope it works for you. xx

Batty1 profile image
Batty1 in reply to Imagine1

I can’t make a closed fist on one hand and can no longer open anything… it’s annoying for sure.

in reply to Batty1

I'm so sorry Batty. That's awful. Does anything help with your pain?

Imagine1 profile image
Imagine1 in reply to Batty1

Hi, It is awful. I have had problems with my thumbs, fingers and hands for many years now and it was all work related. I had a very physical job as a hotel housekeeper and it was quite heavy work and because of this I can no longer do the job that I loved. You are right it is a pain and my husband has to do a lot of things for me that involves my hands. xx

in reply to Imagine1

I can so relate to that. Mine wasn't from working as I am disabled but my parents have to take care of me in every way and they are in their '80s. I'm only 39 but I have the body of like an 85 year old. I have severe osteoporosis which causes me to have three fractures in my back so I am like a hunchback and because of that I cannot do most things because of how bad my bones in my back are and then along with that now having this repetitive strain injury in my tendons of my hands and wrists is killing me. CRPS is definitely the worst thing in the world but these other things come right after it. I've had to give up so many things that I like to do hobby wise like puzzles and word searches because my hands can't do that much now and I can't do that much because of my back either so I'm resigned to mostly watching TV all day. I get really worried about thinking about what's going to happen when my parents are not here to take care of me but I will just have to worry about that when the time comes I guess thank God they're here now.

in reply to Imagine1

Oh thank you so much. That actually really does make me feel a lot better although I feel really bad for you because I know how much severe pain I'm in and I wouldn't wish it on my worst enemy. So your doctor did recommend hand therapy for you? Have you gone yet? Because I asked my doctor for a script for hand therapy but he doesn't want to write it because he doesn't know if it'll do more harm or more good since I tried this stretching exercises in the beginning and I felt like it made my pain worse... Please let me know if you do end up doing hand therapy how it ends up going for you...

Imagine1 profile image
Imagine1 in reply to

I don't know whether to have the hand therapy because like you I don't want to make them worse. I have lived with problem hands, fingers and wrists for may years now so I get used to it. I am scared of making them worse because of CRPS which as you know makes everything worse than they should be. I was told way too late that if I have an operations in the future that it WILL make my CRPS worse so if possible try not to have any operation only if you desperately need it. I had my Gall Bladder removed last year not knowing what the doctor had said, I had a terrible reaction from the anaesthetic which I never had before. My blood pressure went dangerously low and when I came round from the operation I was put in a body suit which had hot bottles over it to get my blood pressure back to normal and ever since I have had worse problems and now my Gall Bladder has gone, I get severe pain from my incisions and all this is because of my CRPS xx

in reply to Imagine1

Oh my gosh that's terrible. Well my back is so bad from my osteoporosis and having three spinal fractures that my back surgeon/doctor told me a couple weeks ago that he's either going to have to put me in a back brace for the rest of my life to try to keep me from getting my back from getting more curved over or what he really thinks is going to have to happen is he thinks I'm going to have to probably get a spinal fusion at some point and as you know that is a very very involved procedure where they would have to put like rods and screws and everything in and right now my bones aren't strong enough and because of the osteoporosis and my weight isn't good enough because of my anorexia but that terrifies me thinking of having to get that huge surgery because I'm afraid it will set off my RSD but yet at the same time he told me that if I don't get it he's afraid I can end up in a wheelchair due to the extreme pain and the extreme bent over back that the kyphosis could cause if my back keeps carving which he thinks it will. So I've got a whole host of things to worry about. in a couple weeks I think I'm just going to get the custom brace made for my back and just hope that it will keep me up because I don't ever see myself being able to get the spinal fusion because I'd have to gain about 50 lb which for me is terrifying having anorexia and also like I said I don't think my bones would ever be good enough to get the osteoporosis to get the spinal fusion but I hope that they will be but I don't know if they will.

in reply to Imagine1

Imagine, so you have the tendon pain in both wrists and arms like me? What do they think is causing it like did you have an injury that caused it or did it just all of a sudden come on one day? I was doing one of my word search puzzles and all of a sudden I got a little bit of tingling down the arm well I was also in physical therapy for my back doing resistance bands and they upped my repetitions and put in 2 lb weights which I'm not used to doing anyways at all and so I was doing that everyday and like I said I was starting to use a puzzles like all day everyday rather than just my usual 2 hours a day and so then to get the numbness to go away I started over using the left hand since it was in the right hand and then I started doing carpal tunnel exercises that I saw on the internet like pulling your wrist back and holding it and then pulling your wrist forward and holding it and at first I thought it was helping but then it ended up making the pain worse so I thought that a combination of all these things is what set off the tendon pain. and even after resting and stopping all of that I can't get it to go away. So I wondered in your case that it just happened or was it like me to wear like you were doing a bunch of things that probably injured it?

Imagine1 profile image
Imagine1 in reply to

The problems with my thumbs, fingers and wrists were all work related. Doing the same things every day at a fast pace, I was a hotel room attendant which I have been doing for about 10 years but they gradually got worse and now I can't work because there is no job that I can do without using my hands and I have a problem with my foot/ankle when I had a fall downstairs at home 4 years ago which was broken but I never got any treatment for it and now I am left with a limp, I can't walk far and it is like I am walking on hot coals because this has also triggered the CRPS off. So now I am classed as disabled where before all this I was very fit and active and now I can no longer do anything.

in reply to Imagine1

I can totally relate as my RSD started with breaking my right heel in my foot in 2007 when I was only 21 and now that I'm 39 I've had RSD full body since all those years as it quickly spread.

Imagine1 profile image
Imagine1

Hi, I replied to you a few days ago about having the same problems as yourself, I am going to see a hand therapist tomorrow morning, it was a cancellation luckily. I will let you know how I get on? speak to you tomorrow. Take care. xx

in reply to Imagine1

Oh that's great for you! Yes please tell me how it ends up going. I wish that it would give you relief! I asked my hand doctor about it and he said that for me he felt that it could flare up the pain since I had already tried hand stretches in the beginning which I feel might have brought the pain on so for me he suggested that he doesn't think it's going to make things any better but he did say that it could make things worse so he advised me not to do it so I'm not going to pursue that. But I hope it goes really well for you please let me know as I'm very curious! Good luck

Imagine1 profile image
Imagine1 in reply to

Thank you, I would prefer to see if I could have a steroid injection to see if that calms my hands down a bit, rather than hand exercises because I think it will make my hands worse. So long as the injection doesn't have opoids or opiates in it. I am allergic to these.

in reply to Imagine1

Well then why don't you push for that first? See I did have that done I got the steroid injection and it didn't have any opioids or opioids in it. It just has like a some sort of a steroid I want to say prednisone or something like that but I swear it's a steroid -it's not any kind of opiate of any kind. They say that that helps most people who have either really bad tendonitis or really bad carpal tunnel however for me I got no relief unfortunately. But it's definitely helped a lot of other people so I would get that or push for your doctor to get that. I know you're not asking for my advice but now that the hand doctor said that to me it kind of makes sense. So I'm thinking maybe if you could put off that appointment and just see if you can get the steroid injections maybe you'll get relief with that and you won't need to do the hand therapy. Or you could of course try the hand therapy if you want to and see if that does give you relief as I am curious but like I said I hope it doesn't make things worse either. But yes please let me know.

Imagine1 profile image
Imagine1 in reply to

I am led to believe that the hand therapist can give me the injection. The doctor won't because I have already asked. xx

in reply to Imagine1

Oh okay that sounds good. So why don't you try that...

Imagine1 profile image
Imagine1 in reply to

Hi, I went to see the hand therapist today and it wasn't as bad as I thought it would be. She was surprised how little I could move them. She has ordered me some compression gloves for my hands to ease them a little bit. Hopefully it could help a little bit. xx

in reply to Imagine1

I hope that works for you!

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