SEVERE CHRONIC PAIN WITH NO SOLUTIONS!!! HELP

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8 years 4 weeks ago #15382 by MrsBlack96
Im going to start with the short version & if anything sounds farmiliar to anyone can you let me know!!! :)
When i was 14 I got terrible pain in my right arm, it was so severe i ended up not being able to use my arm, i had pain, pins & needles, sweating, swelling, it went cold like i had it in a freezer & it ended up not being used.
I saw 10 GP's & 5 Specialists before i finally saw a Thoracic Surgeon who diagnosed me with Thoracic Outlet Syndrome (TOS) I had my first rib removed & all was good.
When i was 18 (so 4 years later) I started getting pain in my arm again, it has gotten worse over time & now almost 3 years later we still have no idea what is wrong.
My symptoms now include:

Excrutiating right arm pain
pins & needles
swelling
weakness in the arm
i am getting back to the point where i cant use it again
I have had a million tests & tried heaps of medication but nothing had worked, The drs are stumped as to what it could be.
Please HELP ME I cant live with this anymore :( I am a mess

Alicia :)

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8 years 4 weeks ago #15383 by Peter
Hi Mrsblack,

Welcome to the forum and sorry to hear you are having this pain that has the doctors stumped.

Unfortunately, we don't know either. We cannot give out any clinical advice, but if there are others here who suffer something similar to you, they may be able to shed some light on the situation for you.
But boy, removing a rib seems pretty drastic and it looks like it hasn't worked in the long run anyway, if your pain has returned.

What state do you live in?

I know this sounds hollow, but I do hope at some point you will get this problem diagnosed fully, so that you can finally get the right treatment. I'm just sorry that we probably won't be able to help you much, except to be here for support.


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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8 years 3 weeks ago #15385 by Mary
Hi MrsBlack, and welcome to the forum.

As Peter has stated, we are not doctors, so we can't give you any clinical advice, but we can offer support and give you a place to come any time that you feel the need. I am familiar with TOS and that the removal of the first rib is usually the answer. I was actually checked out for this some years ago but I don't have it.

I am presuming that you have seen the same Thoracic Surgeon who diagnosed your TOS? Otherwise, have you seen a Pain Management specialist? They can often diagnose pain conditions that others may not think of.

If all else fails and everything is showing up as "normal" on your scans etc., then another approach could be a multidisciplinary pain management program. These programs can go a very long way with helping you to manage pain of unknown origin. If you speak with your doctor or pain management specialist, they should be able to point you in the right direction with that.

Please keep us posted as to how you are doing. We can certainly offer you a lot of support and some tips for coping when things are really rough.

All the best,


Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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8 years 3 weeks ago #15386 by grappers
Replied by grappers on topic SEVERE CHRONIC PAIN WITH NO SOLUTIONS!!! HELP
Welcome MrsBlack, boy having a rib removed for arm problems seems a bit severe, but then the central nervous system plays funny tricks on our bodies. I have a shoulder injury which has a few of the problems you have outlined, caused by using my left arm to stop a fall from my back letting go, it's not fun as I rely on this arm for my cane.
I suppose this is a silly question but have they done MRI's to determine any possible source of your latest setback and are you involved with a pain management team.
We all understand the pain and torment you are going through, all we can offer is an open mind, support and non judgemental ear, please keep posting and let us know how you are getting on.

Don

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8 years 3 weeks ago #15392 by kebsa
i am sorry to say i do not really have any answers for you- i have heard of TOS and the rationale for removal of that rib is to relieve a nerve impingement (it seems that so of us have a very narrow opening at the top of the rib cage where major nerves pass through down to the arm and it can cause the pain of TOS. The only thing i can add is that add grappers has said, the central nervous system is a strange thing at times- there are lots of theories about how changes occur in reposnse to severe ongoing pain. if you are still having persistent problems i would be seeking referral to a chronic pain unit - they can assess you pain, look at the potential causes etc- if the pain is not reversible then they can help get it under control and help you by teaching you the tools to live with what you have-that might sound scarey but it is possible!

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8 years 3 weeks ago #15393 by MrsBlack96
Replied by MrsBlack96 on topic SEVERE CHRONIC PAIN WITH NO SOLUTIONS!!! HELP
Hello

Thanks for the replys guys :)

I am not looking for anyone to diagnose my problems just interested to see if anyone else has experienced anything similar to me.
I find life very hard to keep going with.
I work full time in administration so i am forever using my arm & i am also right handed so it makes it so much harder.

I feel like no one around me can really understand what i am going through & how much pain i am truly in.
I have severe depression due to all of this as well so i am really struggling.
Hoping to find some people who can understand how i am feeling.

:)

Alicia :)

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