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does anyone else with FIBRO suffer from severe pain in upper arms and shoulders?

cherrypie profile image
32 Replies

ive got it at moment. its like my arms have been strapped to a bed and pulled in opposite directions.... Gp has advised to use ibuprofen and wear support bandages but they make it worse...... il try anything!!!!!! im on daily and nightly dosages of Pregablin but thats not doing much

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cherrypie
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32 Replies
summerlite profile image
summerlite

Hello cherrypie. I really suffer with my upper back, shoulders and arms. It's really bad when I'm particularly fatigued or when I've overdone it. All I can recommend is taking the meds, especially the tramadol. I try to limit my daily intake of painkillers so when I'm really struggling they can hopefully kick in and ease the pain. But I do know how horrible it is when you have burning muscles and aching bones, I totally empathise with you. Hope it gets better soon, S x

cherrypie profile image
cherrypie

When you get pain,is it symetrical-down both sides of your body???bith my arms,shoulders and neck hurt in same places

I had this - worse in left arm / shoulder. some days I could barely turn my neck, and felt a robot I was so stiff and sore! I put up with it for ages. Eventually mentioned it to my GP, who sent me for an xray - showed nothing, but the consultant who looked at it decided I needed an MRI - showed nothing so I got sent for physio. Luckily the physio I saw is an expert on shoulders and elbows - pretty much all she does. She did an ultrsound, and showed me exactly what was wrong. It wasn't the fibro, and although I have a bit of OA, that wasn't the problem. It was bursitis, with synovitis complication, and a steroid injection sorted it out. Wish I'd gone months before! So, my advice would be to get it checked out by someone who can do an ultrasound and knows what they're looking for.

Kaz

xx

summerlite profile image
summerlite

Hello again. Yes I have like a short cardigan effect, you know like a bolero, of pain!! At the moment my skin is sensitive too. Sometimes I give up trying to cope and get in a hot bath, soak and then go to bed. It's a horrible pain/ache isn't, one you can't really explain to anyone. I think I've learned to know when to cut things down to keep the worst at bay. But I do have a busy home life and I'm a single mother of three, so sometimes overdoing it is something I can't prevent! But , I do try to go with the flow and keep my stress and frustration to a minimum. S x

Rhurd3535 profile image
Rhurd3535 in reply to summerlite

I understand your pain my legs arms back toes and fingers hurt. My body hurts like someone bet me. Sometimes I can't close my right hand and right now my whole right side is unbearable from the neck down my back, shoulder,arm, and outter part of my leg.

jjojay profile image
jjojay

Hi ,, yes I do , I also get breast pain and underarm pain. It's totally unbearable. Doc advised ibrobuphen , it just takes the edge off my shoulders but arms neck and breasts are still terrible . I had it on and off for three months breasts were so severe I couldn't wear a bra. I just got plenty of warm baths and lost even more sleep . I wasn't diagnosed at the time so I didn't know what it was. Everyone thought if started with the change . Am 44 was tested and wasn't even in pre menopause . So it's most probable it's fibro it's been better over last month . I used organic primrose oil got it on amazon . Maybe it helped but loosing weight may of helped too because I felt better after I lost weight , sorry to hear of your discomfort. Upper arms felt like sooo sore and bruised . I had to lay in bed exsteemly carefully and darnt move. If I have it again I'm going to ask doc for something much stronger , amatriptaline is apparantly good , it will be wrong spelling no doubt but I've heard it's pretty good in pain relief for fibro related pain x

KatieERoberts profile image
KatieERoberts in reply to jjojay

hey amitriptyline is good but its got the worst side effets ever! it was the single reason ive broken up with a long term partner was because on that stuff im a different person i didnt even know myself anymore its horrific. The pain did go away but last week i switched to pregablin even though its not as strong and the pain is a little worse than it was on amitriptyline i feel like myself again. amitriptyline is an anti depressant but in the low dose for us its a good pain killer, but because of its qualities of an antidepressant it completely numbs you, which i suppose is the intended purpose. I felt nothing for months, i didnt get excited, upset, happy or anything it was horrific, if you dont care about those sorts of things and you purely want pain relief then i would reccomend it but personally i want to feel like myself and not a drugged up doll.

Honestly i would avoid it as much as possible xx

jtays6 profile image
jtays6 in reply to KatieERoberts

I would stay away from it too makes you feel like your starving all the time I gained a lot of weight. The doc wants me off it now and it's hard to get off it.

Soniaba profile image
Soniaba in reply to KatieERoberts

Me too i put on over 3 stone with it, stopped taking it and within 3 months just over 2 stone literally just dropped off

in reply to KatieERoberts

Agreed. Everything you said. Five months ago I visited my GP about my shoulder/arm pain and instead of sending me to an orthopedist or someone to diagnose a problem he put me on Amytriptylene. I've weaned myself off and am enjoying "feeling" again and being more productive. Originally marketed as an anti-depressant it is being used for something it wasn't intended. Originally my doc prescribed it to help me sleep at night and to help combat the pain. At first I welcomed it. Slowly I got immune to the 25m dose and needed to move up to keep up with the pain, but the side effects were impossible to ignore. Right now I'm using some ibuprofen for the worse and sometimes Motrin PM which works really well a couple times a week. I'm 62 and was diagnosed with fibro 13 yrs ago. The arm and shoulder pain has come on in the last few months and seems the most debilitating. Hope you find the help you need.

yorkshire_lass profile image
yorkshire_lass in reply to

I was put on amitryptiline when my GP diagnosed nerve pain. I was like a zombie, I had to avoid driving long distances because I couldn’t stay awake, and I was sleeping late in the mornings and then having sleeps in the afternoon as well. I was only on a very low dose. I could hardly think some days. I changed to Nortryptiline but the effects were just as bad, so I came off it. At the moment I’m just on paracetamol with occasional cocodamol.

cherrypie profile image
cherrypie

Thankyou everyone.it helps knowing im not the only one going thru tjis

guineapig profile image
guineapig

I do and have severe pain in the tops of my outer thighs as well, I have fibromyalgia but also Polymyalgia Rheumatica which affects the tops of arms, thighs. I was referred to rheumatolgist and have been on steriods for over 2 years, I have flare ups of bursitis in hips and shoulders and get steriod injections, asked to be refered to rheumatologist you night need steriods I am 44 which is young to get PMR but i have and nothing works apart from steriods good luck x

Jjudith profile image
Jjudith

YES YES YES!!!!

I tried to get a MRI scan of my neck in UK and couldn't (doctors in Dubai don't like it when patients know more than they do), but I came to Dubai and had an MRI scan and it showed positional cervical cord compression which is associated with Fibromyalgia (71% of fibromites have it) and the good news is it can be treated - I have been having therapy for 2 months and I can concentrate better now than for a couple of years. The MRI also showed that I have compression of the nerves in two places as well, and that is the reason for the pain and weakness in my left arm and the tingling in my right arm. So really do try to get an MRI scan of the neck, both straight and extended. Google Prof Andrew Holman PC3 and you will get all the info you need.

monkeej2106 profile image
monkeej2106

Hi Cherrypie...I have been suffering with this for about 3 months now. I find it difficult to sleep with the pain...and I struggle to lift my arms to wash my hair in the shower. I describe it as feeling like I've been swinging on monkey bars...it feels like a burning pain when you have done to much exercise but then it turns into more of a tingling sensation. I'm off to the docs again next week to see what they say. In the meantime I'm just taking ibuprofen!!!

druss profile image
druss

hi cherrypie, going for mri scan on the 14th, have neck injections every 3 months, they do help but still have pain in shoulders arms and wrists and hands, feel for you i try to find the bits that don't hurt, good luck hugs to the bits that are pain free

Druss

cherrypie profile image
cherrypie in reply to druss

Thanks all.ive had the crappyist night in a long time....ive got a TENS machine im gonna try out too

Artmix profile image
Artmix

I have a lot of pain in my left shoulder, across my chest and down my left arm. I have just had a stress test. I was told I could have angina, if not it will be a combination of Cardiomegally ( enlarged heart) and Fibro. I often feel like I have pulled muscles in my ribs and its agony when I bend over. They said it doesn't help that I have a walking stick in my left hand and that could cause stress on the shoulder joint. I take tramadol and have some liquid Oromorph for when its bad. At the moment I also have angina medication and asperin an a spray, I use a wheat pack and warm baths and analgesic rub on creams. They don't help much. Sometimes I just lie in bed in pain. It all sounds pretty miserable but I do try and put on a smile.

anbuma profile image
anbuma in reply to Artmix

Hi Artmix

I was told last sept that I could have angina and underwent tests in cardiology dept at hospital taking angina meds and asperin spray .mine turned out to be gallstones as picked up on ultrasound when i saw a private DR as mine wouldn't do a scan apparently gallstone symptoms are similar to that of angina

fairycazzie profile image
fairycazzie

hi cherry pie

yep am afraid so and i am on Lyrica a high dose now had since feb 2011 and almost 2 yrs of pregabalin which for me has been a life saver for the tingling and pain but now onto pain management. i take co-dydromol every 2 hours along side it and i have to say i nearly gave up on pregablin but it takes time to get into your system,

i can take codeine or tramadol too but the combination of lyrica and co-dydromol help me but i can not miss a dose as it is pretty bad.

maybe you could ask your Dr to change the pain side of meds rather than the pergabalin?

i use heat pads, i have a tens machine too, wheat heat bags and creams and i relax the best i can (not easy as i have a very busy life style with work and home)

take care and hugs to you xxxxxx caroline

PennyUK profile image
PennyUK

This question and answers have helped me understand my own problems better. I have had really bad pain in my upper arm and shoulder, not symmetrically, At first it was my left arm and I was taken to hospital with a suspected heart attack, Later my right arm succumbed and was far worse, still hurts badly although I take lots of tramadol, naproxen and cocodamol. I also get tingling, slightly different from usual in that it feels as if I am sprayed with pinpoints of icy water. I thought I must have badly pulled muscles although I had no recollection of any event that could have done that. Now I realise via these answers that it is just fibro!

LisaFW1965 profile image
LisaFW1965

I get bad pain from time to time just putting a light purse on my shoulder. I live in a third story apartment and some days, have problems getting upstairs. The good days are few and far apart anymore. I'm having trouble sitting for long priods, so a job has become next to impossible but I have to work. No meds work. It's hard!

Dolly84 profile image
Dolly84

I've just posted about same thing! I don't know what to do

mason profile image
mason

hi cherrypie i have had this pain for a month now its in both arms i also get pain in my hands my left hand suddenly goes dead straight i cant bend my fingers have to put it in warm water and wait or it goes into a claw .going for a blood test tomorrow dont know what it is ,take care hope you get help .

Brightoni360 profile image
Brightoni360

Yes I am in terrible pain in my shoulders too. On gabapentin and amitriptyline. Have had it for months now, sometimes if I overstretch I yelp in pain. Don't want to have more painkillers so am going swimming twice a week. (No-one can see you crying when you are in the water). I will persevere for a few months and let you all know if it helps.

Brightoni360 profile image
Brightoni360

Hi Cherry pie I too have so much pain in my shoulders and upper arms. Been back to the docs this week. He has told me to do lots of stretches every day. This will be painful but we need to use our muscles as much as possible. He has assured me that I will not be doing any damage but lack of exercise makes it so much worse. He has also referred me to a pain specialist who will show me how to build up a programme of exercises.The down side is I will have to wait at least 6 weeks for an appointment Take care.

KatieERoberts profile image
KatieERoberts

i have had back surgery when i was 11 which means i will always have back and shoulder pain but i 100% understand where your coming from. Im sure im in alot more pain with the fibro as well than someone who had just had the same surgery as me.

I was told i would never need phyio but im not 21 and without having physio monthly i wiuld be able to do anything so my advice would be to try physio.

Also for my fibro ive just started taking pregablin instead of amitriptyline and finds it does absolutely nothing at all so im with you on that one too! I was told by my doctor to double the dose at night if im struggling so i did that for the first time last night but im not feeling any benefits yet.

Hope you get better soon x

Littleman28 profile image
Littleman28

Yes but I have pain in my whole body. I'm on muscle relaxers 3 times a day and 150 mg of amitriptyline once a day. It doesn't work.

Rhurd3535 profile image
Rhurd3535

Yes on the left side and into my chest and back. I use a massager to ease it but nothing really helps. I hurt all day and it's hard to sleep.

N2Art profile image
N2Art

Someone mentioned bursitis...that is very common with fibromyalgia. My mother and so both have painful bursitis. Any autoimmune disease aggravates it. I bought a sonic wave machine for pain and it sends electrical pulses and massages painful areas and helps.

greeneveA1 profile image
greeneveA1

Hi I'm eve I've got fibromyalgia last year my upper arms ache and my knees hips and arms ache it's terrible I can't barely walk at times sometimes I just put up with the pain but have regular hot baths which eases it but my legs get it the most when walking it's getting worse I hate it. It's down to emotional stress how I got it and it causes chest pain too

SuzieQ68 profile image
SuzieQ68

Hi Cherry Pie, I am having a horrible Fibromyalgia flare up for going on a week now. I have intermittent pain in my upper back and arms throughout the day and the pain gets worse at night with difficulty sleeping. I have been taking turmeric curcumin with food at night and Melatonin to help me sleep. Seems to be somewhat helpful. Also, use heating pad and heated massage wand. Praying you will feel better.😊🐈

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