Trying to find out what is wrong with me.

MasterSamurai

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May 19, 2022
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Hi everybody.
I am trying to find out what is wrong with me, since the health system can not find anything even after 6 years of Chronic Pain.
I will give an overview of how it started and progressed.

Pre 2016 - No major issues with pain. Had some neck and back pain from time to time, but this was easily fixed with some Chiropractic help.

2016 - The chronic pain started. I got the "normal" neck stiffening one day, went to the chiropractor as I always do when I had these issues. She did the standard routine and for the first time also some needles in the neck neck\shoulder muscles.
This time the pain in my neck went away. But the pain in my upper back and shoulders stayed with me.

It kept getting worse and worse to the point that I could only work at 20% capacity. After 1-3 hours at my desk, I got such severe pain in my shoulder and upper back muscles that I could not work more. In addition the chronic pain also came in my upper arms.

I had a daily routine which was.

1. Work as much as my body tolerated. (1-3 hours)
2. Went to gym for a 1 hour swim (which helped), and had a 30 minute sauna.
3. Went home to relax for 2-3 hours to manage the dinner and evening time.

The pain was not getting better. I was at an MRI, at several specialists and no one could say what was wrong with me.
According to the doctors it was not any known illnesses. And it was just something I had to live with. It could get better, it could get worse and it could go away......
Lucky me!

Since the pain was only getting worse I did a lot of research and tried many different forms of treatment.
I stumbled upon a really good massage therapist, which said that I had a lot of issues with my connective tissue and hat I had capsuled inflammation in both of my arms.
I went to him for several months (Once a week) , and I got so much better that I could return to 100% working again.

Unfortunately the chronic pain never went away, it only got manageable. And even with the new info from the Massage Therapist, the doctors could not find anything wrong with me.

I have for the last 5 years worked full time, but I have pain in my upper back, shoulders and arms 24/7, but of different levels.
Some days I forget a little about it, and some days I have to go home from work because of the pain. Luckily I have a good employer, which is understanding, and I can do a little work at home when it is too bad.

My life is affected by this a lot beside the chronic pain issues of course.
I LOVE hiking and being outdoors. But I cant carry a backpack. 2H with a fully loaded backpack and I have severe pains in my shoulders and back muscles for several weeks. I can's sleep on hard surfaces, so tenting is a no no.
I can only drive a car with middle support for my right arm. If I do not have this, my shoulder and arm will start throbbing with pain after 30-45 minutes, and I will have the pain lingering for a few days.
I cant work in the garden or do anything that strains my back or arm muscles for any period of time, then I will have problems for a week.
Any repetitive movement and the pain increases a lot.

I am hoping to come across other that might have the same or similar issues, and hopefully someone can point me in the right direction regarding helping me find out what my diagnose could be. Because the worst is not knowing.

I will try to explain exactly the places the chronic issues are in range of severity :

- Right upper arm (From were the shoulder bone end and down to the elbow)
- Right Upper back (From below the arm at the chest and diagonally up to the Trapezius)
- Left Upper back (From below the arm at the chest and diagonally up to the Trapezius)
- Left Upper Arm (From were the shoulder bone end and down to the elbow)
- Right Lower Arm
- Left Lower Arm

When massaging the muscles in my upper back, there are a lot of "noises" which can be heard quit clearly.
When stretching my arms, it is a lot of popping in my elbow joints.
It helps rotating my arms quickly and quite hard from left to right, when they are outstretched. The pain will go away for a little bit.

I know that I am lucky that I can live a quite normal life, managing to keep my job. But it is keeping me from so many things in life and I really hope that someone will have some insights that I can use. And optimally I would hope that someone could steer me in a direction for an actual diagnose. Even if I know that is hoping too much.

Sorry for the long read. Any and all comments is appreciated.. :)

Best regards
 

JayCS

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Hi Samurai, and welcome!
Didn't all your specialists even mention things like fibromyalgia or Chronic Regional Pain Syndrome?
To see if fibro might be the right direction you could look at one of the more recent sets of criteria there are, attached. I'd suggest that your pain isn't widespread enough and you haven't mentioned further symptoms.
Because the worst is not knowing.
Well... when you don't know it may seem that. But you may find that knowing what it is will give you just as rough pointers as trying to treat your symptoms more effectively without knowing. At least that was my experience (partly).

For pains like yours, I'd suggest trying a row of further good physios aside from your massage therapist, e.g. osteopaths, chiropractors, acupressurists, praps also cryotherapy, there are many more than 20 types. And to do on your own: exercises, stretches, acupressure points, trigger points, using youtube videos for your various pain types.... Does that help at all?
 

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