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I don't want the cure, diagnosis would be more than enough

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I have lost my hope for recovery quite a while ago, finding out the name of the condition/disease that has ruined my life would be satisfactionary enough. There have to be some people out there in the world who suffer from the same illness, it has to have a name. I don't believe that I'm this special and definitely don't want to be. First thing below I have described the symptoms of my condition, after that there is a lengthy background and how it all started for someone who is bored enough to read. Excuse me my English as it's not my first language. I don't know how many people will read/see this but I would be very grateful for any tips or advice that could potentially put me on the right path to reach my goal.


What ever it is that I suffer from it's action triggered, the more I trigger it, the sorer and pain sensitive it becomes. By saying action triggered I mean by applying any stress or physical contact to the effected area typically by using too much strength which would result muscles to flex and trigger pain. I can probably use about 15 % of my strength in my right arm to stay on the safe side. Any type of stretching would trigger the pain as well, hard flinching is a no no (I have to be careful when I sneeze) and finally by accidentally hitting the effected area. The pain is never the same, one time it feels like burning sensation inside, the other time it can feel like something is wrapped around my bone and applying pressure. Painful area can be bigger or smaller and where it is would normally depend on where was it triggered. The most sensitive area is around the right elbow and inner side of the arm but right chest muscle has become quite sensitive lately as well. I often aggravate it while asleep, unfortunately we can't control ourselves when sleeping, we move around when dreaming and change positions. It is somehow similar to CRPS (Complex Regional Pain Syndrome) but for what I know about CRPS it's quite different. I've red that someone who has CRPS, you can't even touch their skin it's so sensitive to pain, my skin is fine, I can touch it. It's the deeper soft tissue that is sensitive like muscles, joints and tendons. I believe that CRPS only hurts in the moment of contact and doesn't cause long lasting inflammation type of pain like in my case but I'm not too sure of that, I would like to speak to someone suffering from CRPS to find out more about it.


My problem started in 2011, over 10 years ago.I have always been physically active, trained with weights since I was 16 years old. Growing muscles and getting fit was my hobby, I enjoined learning and applying healthy diet as well. I always had the feeling that there is something wrong with me, when doing certain exercise like chin-ups with the hands close together on the bar at one point I could feel a weird pain on the inner side of my arm (both arms to be exact), I couldn't really pinpoint where exactly it was, is it a bone, muscle, tendon or maybe the nerve itself. The pain that I could describe as rheumatic was dull and unpleasant so I didn't do that exercise, nor I arm wrestled with the other boys, although being stronger and usually winning I was at some point getting the same pain as well, after that I would have to take a break from the gym for a weak or so to make the pain completely go away. So that was never the problem, I was just avoiding activities which were triggering the mysterious pain. Any other exercises like bench press, biceps curls or deadlift I could do with the full weight on and never felt any pain of such.At the age of 29 I got myself in a great shape, I had well developed muscles and by doing daily cardio (jogging) I got myself so called six-pack. I went to the body fitness expo where I participated in pull ups and dead hang challenges in which I did really well. The whole experience motivated me even more to develop my physique. I started training with heavier weights and I got so called heavy-grips. I could close 200 lb heavy-grip quite easily multiple times but was struggling to do even one rep with 250 lb. One day I grabbed 250 lb heavy-grip and tried to close it (with my right hand) without any warm-up. The familiar and mysterious pain on the inner side of my arm struck my like an electric shock. Initially I felt disappointed because I knew that I need to take at least one week break to let the pain completely go away but at the same time being hyped up for training I didn't want to do it. I was impatient and only gave myself 2 days break before doing regular workout with weights, I didn't feel pain during the training but started hurting few hours after. Reluctantly I decided to take a longer break but I was still impatient so in the meantime I started searching online to find out what could be the problem. I didn't want to listen to my intuition, it was more comfortable to believe that it must be some common problem and there must be a common solution to it. Of course I found plenty material about injuries that felt somehow similar to what I felt. For the most part a golfers elbow, which is micro damaged tendon on the inner side of an elbow from repetitive activity that golf players typically do. I started dipping my right arm in a hot and then cold water, that was supposed to increase the blood flow to the damaged soft tissue and speed up the process of healing. In my case it only made the pain worse. So I decided to visit my local GP (big mistake). Initially I was being prescribed with anti-inflammatory drugs like ibuprofen and naproxen. When that didn't help the GP asked me if I want to go to the physiotherapy, feeling like I have nothing to lose I said yes (another big mistake). The scheduled visit was in 3 weeks and I already didn't feel pain in my right arm due to the long break from training. Their job was to find out what type of injury I have and then give me recovery exercises plan for me to do at home. Since I never had any injury in the first place they couldn't find anything. I ended up with one guy literally hanging on my forearm triggering the pain back again. His conclusion was even more shocking: sprained bicep and I was told to do bicep curls with the bottle filled with water as a recovery. That was the defining moment when I came to realization that I'm suffering from something very rare and all those medical professionals have never even heard of it, let alone being familiar with treating it. At that point my arm started becoming more sensitive to any triggers. I slowly started adopting to a different lifestyle to avoid aggravating the pain like brushing my teeth using left arm instead of right. I come back to my GB and managed to convince him to send me for an X-ray, when that didn't show any problem I was sent for MRI scan which didn't find anything either. Next step was going to the private hospital where the doctor gave me false feeling of hope. He found that I belong to the 5% of the population that have their ulnar nerve jumping out of the groove when bending their elbow and jump back in when straightening and that can cause nerve irritation and pain. Although my pain was not at the elbow but a bit higher up but I fell for his diagnosis and decided to undergo the operation that would trap my nerve and permanently keep it outside of the cubital tunnel to avoid pain causing irritation. Unfortunately the operation happened to be another trial and another error. At that that point I started believing that my condition must be some type of autoimmune disorder, at the end of the day my mother has Rheumatoid arthritis and them conditions are often passed down to the next generations. So I went to rheumatologist, I got my blood tested for gout and other disorders which found nothing. The doctor only triggered more more pain by trying to examine my arm, at the end I received a steroid injection which made no difference. That was my last contact with any medical professional regarding that. I felt very demoralized, reluctant to go to another doctor because previous visits only made my condition worse. Instead I started searching the internet more, trying to find something that fits my personal description. I started testing supplements, diets and even tried acupuncture. The list of supplements and drugs I tried out is quite long, some could slightly ease the symptoms, usually the ones with anti-inflammatory properties. The longest I fasted without any food while only drinking green juice was 12 days, I even became an organic vegan for 2 months right after, without any positive result. The situation was gradually worsening and sensitive to pain area was spreading. For example I have to be careful when washing my hands, if I press them too hard against one another I would feel pinching pain in my elbow joint and it's not about the pain at the moment of action but the long lasting pain after, that can come and go for days usually depending on how hard I triggered it. It is effecting the whole top right part of my body: the whole right arm, shoulder, right chest muscle, right back muscles and even right side of my neck. It hasn't progressed for a long time now, maybe the condition has reached its final stage. It might sound like there is something wrong with my spinal cord since only one side is effected but I could get it on my left side too, I just never triggered it hard enough so it's kind of in a sleep mode and hopefully stays like that for ever because then I would be completely disabled if I had this on both sides. Over the years I have completely adopted to a different life style. I more or less know what I can or can not do with my right arm. If one shopping bag is a bit too heavy then I will grab both shopping bags with my left hand just to avoid triggering this terrible pain because I'm not getting any special treatment at work, whether I'm in pain or not I have to do my job, nobody like the moaners so I suffer in silence. This is one of the reasons why I would want to know the name of it. I'm tired of telling people that I have arthritis but for now I have no choice. If I say that I don't know what that is they can give me a weird look and then talk behind my back that I'm some crazy hypochondriac with some mental issues. Very few understand how emotionally damaging those experiences can be.


Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,981 Disability Gamechanger
    edited September 2021
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    Hi @Anonymous_Sufferer

    Thanks for reaching out to us. It sounds like you are in a lot of pain and have found strategies to manage this but you would like a diagnosis as this could come with more understanding and support. Unfortunately, we do not diagnose people here at Scope and you would instead need to speak to your doctor in the first instance. However, here at Scope, we do offer a supportive environment where you can discuss your experiences and communicate with others with similar experiences. You say you would like to communicate with others with complex regional pain syndrome (CRPS). I am wondering if you have seen our discussion called 'does anyone else suffer with complex regional pain syndrome?' (https://forum.scope.org.uk/discussion/82189/complex-regional-pain-syndrome). You might also benefit more generally from our discussion called 'dealing with chronic pain' (https://forum.scope.org.uk/categories/chronicpain). In terms of adjustments for work, have you tried to discuss your needs with your employer as they might be able to arrange reasonable adjustments for you or signpost you to Access to Work? I hope this helps but if you have further thoughts or questions, please do not hesitate to let us know  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • chiarieds
    chiarieds Community member Posts: 16,173 Disability Gamechanger
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    Try this instead for Scope's 'Dealing with chronic pain category':
    https://forum.scope.org.uk/categories/chronicpain

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,981 Disability Gamechanger
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    Good spot, thanks @chiarieds:)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Anonymous_Sufferer
    Anonymous_Sufferer Community member Posts: 2 Listener
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    Hi L_Volunteer and chiarieds and thanks for the feedback, I appreciate the links you have given, I will take a look and as for speaking to my doctor, I have been through enough trauma from dealing with my GP's and I don't need any more of that. I was thinking about some online doctors, they pop up in a google search, of course I wouldn't mind paying for it. I'm curious if someone has any experience with that.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,981 Disability Gamechanger
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    Hi @Anonymous_Sufferer

    You are welcome, I hope our links help you. I can understand that you have been through a difficult time with speaking to health professionals. I hope you can find a health professional who you feel understands you, listens to you and validates you. If you need anything else, please do not hesitate to reach out to us  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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