Neck and upper back pain and sensations help

Helpmypain

New member
Joined
Dec 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
Hi
I wasnt sure how or what to write, but im getting worse by the day, so ill start from the beginning and hope I remember everything.
In july/august time I woke up one morning with a sensation of numbness behind my left ear and ear felt blocked.
I disnt take to much notice and put it down to the car air conditioning.
Over the next few weeks I started to feel like id been hit on the back of tbe neck with a plank of wood. It was also tinglering left side of neck.
Due to busy life I carried on with pain and tingerling worsening till sept/oct time when life and work became a struggle.
I saw my gp who sent me for neck and upper back xray and done bloods.
Not much was shown apart from narrowing of something in upper back and general wear and tear.
Bloods high imflamation so had 5 day course of prednisolone, im already on steroids for addisons.
Day 5 I felt a bit better but pain and sensations returned after a week twice as bad and a larger area.
More blood tests showed imflamarion so dr referred me to a rheumatologist and a nurologist, as she thinks its likely Nurologacol.
Come December I was practically crippled with spinal upper back and neck pain.
Also the feeling of wearing a rucksack and someone pressing down on my shoulders.
Got sent to hospital who arranged mri of neck, no results yet.
Been off work over xmas and haven't done much, but pain and numbness getting worse by the day.
I wake up feeling like I'm wearing the rucksack with left shoulder pressure and neck pressure.
As soon as I get up I start getting intense pain from top of neck all down spine to waist
I also now have pain in the bottom of my back after moving and burning toes.
Seen rheumatology who really couldnt be bothered and said its fibro.
Gp not convinced.
Lastly I really struggle to get out the car up from a chair or practically impossible off the floor.
Please help as im really struggling.
 

Helpmypain

New member
Joined
Dec 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
Sorry, I should add, ive been given tramodol, gabapentin, already on codeine and amitryptline and tbe muscle relaxant robaxin, nothing is helping only taking edge off.
Seen chiroparactor who said muscles in spasm and to have massage and come back.
New mattress new pillow, exercises.
No idea what else to do x
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
262
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
If your blood tests show inflammation I don't understand how your rheum. can be satisfied with fibro as an answer. I'd go to a 2nd rheumatologist. Same goes for the neurologist, if they stop at doing an MRI - I'd also get my muscle-nerve-connection fully checked, because it definitely does sound as if it *could be neurological.
I agree that the muscles in spasm need some treatment, but I'm not sure if massages aren't too early, before everything neurological has been excluded, and not gentle enough. I'd prefer osteopathy for both reasons. If the meds aren't helping much, I wouldn't take them, because they will probably quickly be harming more than they are helping. I'd concentrate more on carrying on keeping your pain diary (you seem to be already?) to explain and to find out yourself if anything you do is helping or harming. I wouldn't carry on working like this, it'll probably make it much worse.
Mattress, pillow, exercises sound good - have you read sunkacola's advice at the top of the forum already?
 

Helpmypain

New member
Joined
Dec 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
Hi
Thank you for your reply.
The rheumatologist was awful couldnt wait to get me out.
My gp is trying to bring my appointment for neurology earlier as its not till march.
I think I will go off work for a while as although I love my job I do dread going now.
I havent read the advice at the top yet but will do it today.
Thank you again for your reply, happy new year x
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
262
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Definitely sounds like you need a new rheum., my first one was similar after the disappointment that I didn't have anything he could cope with, poor soul. But your gp sounds good., hope he can get you another rheum. soon too, I wouldn't wait with that, because the neurologist might not help with the inflammation - I can't really imagine that being neurological in your case, but not sure.
Good for you stopping working! I love(d) my job too. When I was up to it and it came up, I started quite a bit of "legwork" (ha-ha, lying on the couch; = preliminary work, organizing things, phoning/mailing around) for my colleagues. That was a good test to see what was possible and what flared too much. And before starting again at 20% I just went there for half an hour a day to see what problems would come up commuting and being there, and getting the "small talk" out of the way before the brunt came. I don't love it any more, if my body doesn't. My decision's pending by trying out and working at managing it, which will help me, whether or no it will 'work out'. Happy New Year to you too!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
976
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I second Jay's suggestion that you go off those medications. You are taking a very powerful combination of drugs that are dangerous to your health and well being. Steroids are very harmful and in the long run will cause you more problems than you already have, I guarantee you. Codeine and Tramadol are both addictive and should never be taken at the same time, so I am shocked your doctor has allowed that. Amitriptyline can cause liver damage if it is taken daily or in high doses. I strongly recommend that you stop taking all of the drugs since they are not helping much anyway. You may need to taper off some of them if you have been taking them a long time to avoid withdrawal. Medical cannabis combined with CBD can help and is not addictive nor will it cause other health issues over the long term if you use tincture and don't smoke it. If you take CBD with only a little bit of THC in it you won't get high. I have learned how to regulate this in accordance with what kind and level of pain I have by having a tincture of each and taking them together but varying amounts of each.

Get that massage and try to see the chiropractor later the same day so your muscles don't have time to tense up again. Or, maybe better yet see a different chiro. Mine knows how to quickly take pressure off tense muscles without massage so that he can do the chiropractic. See a different rheumatologist. Use your time off work to your advantage. Spend time doing the things that will help you and lining up better doctors for you to see.

And the best of luck to you. We are here to help so come back if you have questions after reading the helpful advice Jay mentioned.
 

Helpmypain

New member
Joined
Dec 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
12/2020
Country
UK
Thank you,
Re the steroids I take for addisons disease anyway, I spoke to my gp yesterday as I was worried about taking such high doses so have swapped from hydrocortisone which I take for addisons and now stopping any prednisolone which ive been taken for imflammtion to dexamethasone 1mg which is the equivalent dose to the hydrocortisone.
Stopped painkillers as haven't been on them long and will rebook for chiroparactor and massage.
No results back of mri yet.
Thank you again for your replys will keep you updated x
 

Flexecif

Active member
Joined
Sep 1, 2017
Messages
44
Reason
Diagnosis
00/0000
Country
CA
State
Canada
That's good that everything has been sorted out. Now, all you have to do is wait. Keep us updated and have a happy new year!
 
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