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I don't want the cure, diagnosis would be more than enough
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
-
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 knowCommunity 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. -
Try this instead for Scope's 'Dealing with chronic pain category':
https://forum.scope.org.uk/categories/chronicpain
-
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. -
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.
-
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 usCommunity 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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