Horrible pain

L5RKE

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Aug 3, 2022
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4
Evening all. Over the last 4 weeks, my so called fibro pain has got increasingly worse. My back, neck and shoulder muscles have become increasingly tense and is making my arms increasingly sore, coupled with tingly fingers.
Despite being diagnosed with fibromyalga, I've tried explaining to the orthopaedic that I have MRI proof that I have at least 4 things wrong with my shoulder and nerve impingement at C5 C6 level, but the orthopaedics don't seem that concerned as I'm now labeled as I fibromyalga patient.
Considering fibromyalga is not supposed to be progressive, If I work a bit harder than usual or lift light weights to try and keep strong just causes all over agony, ranging from upper/lower back pain, tingling arms and legs, every rib seems to hurt, armpit pain and chest muscle pain.
Brain fog is now quite apparent with blurred vision.
So fed up with ice packs and gels as the just don't seem to help.
My job is an agricultural Fitter and I'm starting to wander if its the right job for me, but what is the right job when you have all over body pain with no rest bite.
I can go on and on but that makes me more frustrated.
Thanks for reading.
 

cookiebaker

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Jul 26, 2022
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482
Reason
DX FIBRO
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07/2022
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oh, i do feel for you.. i also have neck issues as well as lumbar issues... but in my case, those were diagnosed before getting the FM dx...
If you have medical proof (the MRI) that there are issues, but they are not being addressed, then something needs to change, and the obvious thing would be the doc.
 

L5RKE

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Hi cookiebaker. Your advice is spot on, but I've already tried discussing with the Dr. His response was, you have fibromyalga, it does hurt, what do you want me to do about it.
Not the response you want really!
The saving grace is that I'm going for mote nerve test studies and a 2nd opinion with the orthopaedics.
Fingers crossed 🤞
 

cookiebaker

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482
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DX FIBRO
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07/2022
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2nd opinion is exactly what you need at this point. and if necessary go for 3rd or 4th opinions

i have had radio frequency ablation on my lumbar spine to kill facet joint nerves that were being irritated due to osteoarthritis, and it did help. quite a bit actually, so your doctor's response about it being from fibro is completely inappropriate and unhelpful. I sincerely think you should find a different doc for primary care... one that is more willing to work WITH you in resolving problems and not just blame everything on the fibro.

have my fingers crossed for you as well that you can get some help
 

L5RKE

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Thanks for your opinion cookiemaker, it is a very valid one too. I do find that specialist hate it when you do the research and debate with them.
 

Looby69

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Oct 19, 2021
Messages
37
Reason
DX FIBRO
Diagnosis
07/2021
Country
UK
Hi cookiebaker. Your advice is spot on, but I've already tried discussing with the Dr. His response was, you have fibromyalga, it does hurt, what do you want me to do about it.
Not the response you want really!
The saving grace is that I'm going for mote nerve test studies and a 2nd opinion with the orthopaedics.
Fingers crossed 🤞
Stupid Dr 😤
 

sunkacola

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A second opinion is definitely warranted.
However, if you want a doctor to tell you they can do something to help you with your fibromyalgia, please be aware that you will be disappointed. Doctors cannot help with fibromyalgia, they can only give you pain meds which won't help but only mask the pain. Not saying there isn't a time and place for pain meds but in order to deal effectively with fibromyalgia the onus in on you.

Considering fibromyalga is not supposed to be progressive, If I work a bit harder than usual or lift light weights to try and keep strong just causes all over agony, ranging from upper/lower back pain, tingling arms and legs, every rib seems to hurt, armpit pain and chest muscle pain.
If you are doing this (and I cannot tell from what you say here) I suggest you stop. For right now, don't do anything that causes you pain. Instead do gentle exercise and stretching.

If you have not already done so I recommend reading this post:
 

cookiebaker

Senior member
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Jul 26, 2022
Messages
482
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
if you want a doctor to tell you they can do something to help you with your fibromyalgia, please be aware that you will be disappointed
I've tried explaining to the orthopedic that I have MRI proof that I have at least 4 things wrong with my shoulder and nerve impingement at C5 C6 level, but the orthopedics don't seem that concerned as I'm now labeled as I fibromyalgia patient.

i believe that L5RKE is looking for assistance with the nerve impingement/shoulder issues - not necessarily the fibro - and as such, the doctor is doing a disservice by putting nerve/shoulder issues off on fibro.
 

JayCS

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Considering fibromyalga is not supposed to be progressive, If I work a bit harder than usual
Thanks to @cookiebaker (and @sunkacola) I'm also now re-reading this.
The way it's worded sounds as if overdoing it shouldn't make the pain worse since "fibromyalgia isn't progressive". That'd however be a big misunderstanding of progressive.
If you have fibro and you overdo it then your pain will increase considerably. If I overdo it for let's say one hour, a base pain of "1" can flare to "3", which will often last for 1 to 3 hours, while a base pain of "2" can flare to a "5" or "6" and that can take several days to calm back down to 2 or 3. So if you say "work a bit harder than usual" and you mean a bit harder for 6 or more hours, then I'd be in such a flare that it could take weeks or a month to calm down again or crash big time for several months (my first crash ended in 10 months of sick leave). If that's the case, no wonder ice packs and gel can't help, they haven't the least chance.
"Progressive" means something completely different - progressive illnesses are ones that will generally get worse and worse by themselves (co-morbidities, aging etc. counted out) and praps end in a wheelchair or death. Not that your pain won't get worse if you do more.

The consequence of your work would need to be to either get your work load / type / conditions adapted to your needs (e.g. I can only do a bit of home office now as long as they'll let me) or switch like you say to another job if that isn't possible. Best before you crash completely.

And like sunkacola says: pushing thru the pain to keep your strength up is very likely going to do the opposite very soon, esp. in addition to your job. Once you've rested and got all flares down again, that's the time to work on your strength. If you've been doing a lot up to now, I wouldn't be too afraid that they'll lose their strength. For some it does, agreed, but for me it doesn't, maybe because I keep doing light stretches and exercises all day, plus light sports.

Now if as @cookiebaker has pointed out your orthopedists don't think they can help you with your orthopedic problems, then that's a very common case, something I've often experienced. One possibility is the second or third opinion of a better orthopedist. But I'm supposing they are arguing that the scans don't explain your pain enough. Also it's just if they can't "see" enough, they just can't do anything. So the right people with your musculoskeletal symptoms are good PTs. Good orthopedists will refer you to some, praps suggesting what kind might be best. I've even known an orthopedist to also be an osteopath, which is very rare. But actually that's something we have to look for ourselves, via word of mouth, trial and error, reviews or functional docs.
And in the meantime: Every local pain etc. I look up on youtube and am always (always!) successful in finding something. In your case I put in what you wrote, and up came more than enough stuff for pinched nerve & neck pain by youtube PTs I thoroughly recommend, like Doctor Jo or Bob and Brad or Alan Mandell. Exercises, stretches, acupressure. (Acupressure also for unexpected things like short breath, heartburn and itching.) Since I do this I've got stuff down even my brilliant acupressurist couldn't manage, plus anything new that comes up.
So in that sense I agree: forget your orthopedist and look for these: an expert and self-treatment.

As it's your neck that you're concerned about most:
My neck is something that I've just been working on once again. I'd originally tried some neck & back classes (of which I could only manage 20%, otherwise I was overdoing it so much that I had to cry from the pain, i.e. 7. I "never" cry). My osteopath worked on it for half a year, my acupressurist for another year. Theory of these sort of PTs is that the neck is the bottleneck for the whole body, so they often start with it and focus on it. They got the problems down to praps 50%, not particularly sustainably. Once I stopped going there, when I realized they weren't getting any further, I started going into self-application mode. Doing more and more better stretches gently when necessary throughout the day for several days at at time. I got to be able to turn my head 90° and more in both directions. But at the beginning of this week I felt that there were some "blockages" in a set of neck muscles that I would never have been able to explain to a PT. I started focusing on stretches that I could feel targeted exactly that. Then I suddenly had the idea, as I've been hinting in my profile posts the last few days (linked to in my "signature" below each of my posts), to use my massage gadget gently on the twist-stretched neck. Done that before in my left groin which I completely got down with that, possibly "healed" for quite a time. So I knew from then that it would probably hurt a bit more directly after, but would be partly resolved the next day. And so it was, I got that block down totally inside of 2 days. I'm still not quite satisfied, but might give it a rest for it to settle on its own a bit. Interesting was one situation similar to my answer to @Oberon's "tender" point question on their "touch" thread - the neck pain from stretching was radiating right into my back. Again something you'd have to try to describe a good PT, but as I felt it, I applied the massage gadget gently to where my back was hurting as well, moving carefully up and down along the "route". Pretty sure it's these sort of connections and sensing into our bodies that can fairly thoroughly tackle many (not all) of our local pains.
 
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johnsalmon

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Aug 27, 2022
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Hi cookiebaker. Your advice is spot on, but I've already tried discussing with the Dr. His response was, you have fibromyalga, it does hurt, what do you want me to do about it.
Not the response you want really!
The saving grace is that I'm going for mote nerve test studies and a 2nd opinion with the orthopaedics.
Fingers crossed 🤞
My doctor just ignored the fact that I kept telling him IO had extreme pain so I changed doctors - first visit she fixed my breathing problems ( I have COPD) anbd second visit she fixed most of the pain next visit we are going to look into pain management - some times it is good practice to change doctors
John
 

JayCS

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Hi John and welcome here!
I kept telling him IO had
"IO" is a typo for "I", I realized after a minute... 🙃
some times it is good practice to change doctors
Thanks for another brilliantly clear example! 👐

I don't think this is only a question of good vs. bad docs, but ones that are good for me or my condition.

The saving grace is that I'm going for more nerve test studies and a 2nd opinion with the orthopaedics.
I'm unsure: Isn't that more than just saving grace, isn't that exactly it?
orthopaedics sounds like British English, i.e. UK, so just in case you believe people saying it's not possible to change GPs in the UK, be assured I've been educated there are clear cut ways of doing so.
May not be helpful in rural areas with few and far between tho....
I do find that specialists hate it when you do the research and debate with them.
Of course, doesn't surprise me. So I don't debate research with them, I ask for their opinion on it, and that's never failed. "What do you think about ... ?" or "Do you think it's worth it... or Would it be possible to try...?" If they shrug then they obviously they don't know, so pressuring or debating won't help. But often I've found they then still reply, "But if you want to..."
Or do you mean cases where this wouldn't work? I'm curious... :) 👐
 

johnsalmon

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"I don't think this is only a question of good vs. bad docs," I was not suggesting that any doctor was bad but if you have been going to the same doctor for years as I was then they can tend to lose interest or simply say - put it down to old age- which is a common saying when you get to my age. My new doctor is young and just out of Uni so is up to date with the latest and that's what make the difference. (Please excuse any trying errors as I have essential tremor which makes typing or writing very difficult)
 

debbo

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Sep 6, 2022
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Hi, sorry for your pain, just a quick thought, I got a back neck and shoulder "massage chair" massager, the one I got does an automatic massage which you can soften by putting a thick blanket or duvet over it before starting it up. It cost 180 pounds which is a lot but I used it every day for 6 months or so and it helped alot with pain, I think it raises the bodies natural endorphins which hold back pain a little. Maybe get one and give it a try before you consider changing profession or stopping working for disability which is only fair if you are in too much pain to work. Wishing you love and care and the right advice that helps.
 

Auriel

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Hello @johnsalmon!,
Welcome to our cuddly forum
☕🍪💜
 
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