Help with pain for fybromyalgia? - Fibromyalgia Acti...

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Help with pain for fybromyalgia?

Vickylou26 profile image
14 Replies

Hello, my name is Vicky and I'm new on here. 

Saw rheumy on Thursday and she said she pretty sure I have fybromyalgia. 

I'm in constant pain with my shoulders, elbows and wrists. Also my fingers. I've had steroids injections in my elbows and shoulders but within a few days, maybe a week at most the pain is back, the only thing that really helps is prednisolone but im not allowed any more. 

Currently taking co codemal and naproxen but neither is helping. 

My day to day life is suffering along with my job. 

Does anyone have any ideas and suggestions on how to relieve the pain? 

I'm 33, have a pony and 2 dogs so try to keep as active as possible. 

I've also got an under active thyroid 

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Vickylou26 profile image
Vickylou26
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14 Replies
Sorebones profile image
Sorebones

Hi Vicky. One of our admin team will be along to give you info about the site and say hello as soon as they log on. Our admin are volunteers and people like you and me, fellow Fibro sufferers, so it may be later than sooner depending on how well they themselves are, so please be patient.

There are a good number of us with an under active thyroid. More than can be coincidence in my opinion. We all have other medical oopsies too. Amongst mine is degenerative disc and osteoarthritis. Because of that I'm on some heavy duty meds including fentanyl patches and Tramadol. They don't necessarily help with Fibro pain. I have had some relief using 100mg of amitriptylene. 

You will find that we all react differently to different meds so it's not a 'one size fits all' scenario. Plus none of us are medically trained (at least not for the forum). I hope you get some good ideas from other forum members. I find the help and support on here is great. You will soon get used to us all 🐸

rosewine profile image
rosewine

Welcome to the forum Vickylou.  So sorry that you have unfortunately had the diagnosis but at least you know what you are dealing with as many here have had to wait many years to find out what was wrong with them.

Have you had a look at our mother site Fibromyalgia Action UK as there is some fabulous information on there about various drugs and treatments.  Many of us have to use a combination of things to try and get some relief.  Low doses of antidepressants are often used and meds. like Pregablin might help.

Often the steroid injections don't do much unless you are dealing with osteo arthritis as well.  I was allowed one in my hip by the Occ Therapist. In my hip as she won't usually give them if you have fibro only for osteo.  On my case it has helped for nearly a year but I do have osteo in that hip as well.

Keeping active is good but most of us find that the exercise that suits us best is gentle rather than anything strenuous.  Things like hydrotherapy, acupuncture, Tai Chi and Yoga (the gentle sort) might help.

Pacing yourself can help with fatigue and pain but I realise that that might be difficult when you are trying to hold down a job.  Now that you have a diagnosis would it be possible to ask work whether they could make any adjustments to the way you work to make things easier for you?

Look forward to your further posts and ask whatever questions you want as there is normally someone out there who will try and help as they are a friendly lot.😁

Kitten-kat23 profile image
Kitten-kat23

Hello and welcome. I am sorry I haven't any answers. Sending soft gentle Hugs. 

Vickylou26 profile image
Vickylou26

Thank you everybody for replying to my post. 

I had an MRI scan on my back last year due to the pain there, my rheumy said it was normal where my doctor said it shows degenerative disc in the L3 and L4 also the beginnings of arthritis due to this but again I'm told this is normal. I feel like I've been passed from pillar to post with no real conclusive answer. 

I've been in pain now for almost 5yrs. 

Regarding work I am a cook and work by myself so unfortunately unable to ask for more help with my shifts. My boss does help by putting stock away but nothing else. 

I'm going into work now for a few hours so will respond to you all again later. 

Enjoy the rest of your Saturday :) 

peck profile image
peck

Vickylou, Hello and welcome to our lovely forum.You can get answers, vent, and have plenty of laughs!! I take a couple of strong pain killers but I also have shattered ankle.I hope uou find something to help your pain.Look forward to chatting with you, Peck🌻

Vickylou26 profile image
Vickylou26

Hello, 

My rheumatologist hasn't given me anything yet, she writing to my doctor to suggest he gives me something to help me sleep and relax my muscles. 

The prednisolone was given because I was flagged up as having inflammatory arthritis and it was the only meds so far to help with the pain. 

I'm at an all time low at the moment and have done nothing but cry the past few days which isn't like me. I'm sure once I'm given something to help with the pain I'll be ok :) x

Vickylou26 profile image
Vickylou26

The rheumatologist said on Thursday that shes sure its fybro that I have and not inflammatory arthritis, so frustrating. I'm going to book an appointment with my doctor as I seem to get more info from him than from the consultant. 

When I've been on the steroids I feel amazing, no pain and I can sleep. 

X

Hi Vicky sorry to hear that. Let's take action I feel like that every day but now we have to start doing some kind of excersise Edited By Admin, tell me what kind of excersise you could do at your house?

Vickylou26 profile image
Vickylou26 in reply to

I have 2 dogs and a pony so I break sweat nearly every day lol. 

My pony needs riding plus all stable duties doing. My job means I am stood on my feet for sometimes up to 10hrs with maybe a 20 min break if someon is free to give me one. 

I do a lot of walking, getting in a warm bath is the highlight of my day :-) 

TheAuthor profile image
TheAuthor in reply to

Hi  Axelvazquez

The official FMAUK stance on managing Fibro is to pace yourself so you do not make yourself worse. I have pasted you an excerpt from the FMA UK website about this:

Managing Fibromyalgia 

The best way to cope with fibromyalgia is to use a number of techniques that ease the symptoms as much as possible.

Relaxation is one technique that works really well for almost everybody with fibromyalgia. It reduces tension in the mind and body right away. The results are calming for all the symptoms, especially for the pain. Relaxation can be learned from books, tapes, videos or special courses.

Heat is important. A hot water bottle and hot baths or showers will help reduce pain and banish morning stiffness. Soaking hands and feet in hot water for a few minutes can ease their aching. Exercise is the most common prescription for fibromyalgia and Dr Pellegrino’s section on this has invaluable advice about the form this should take.

Although no particular diet has been shown to help fibromyalgia, a healthy, balanced diet is important to provide protein, vitamins and minerals. It is best to avoid or at least cut down on coffee, tea and alcohol. Some sufferers have a tendency to gain weight and this can be distressing in itself. If you follow a healthy diet this should in turn help with your weight control.

People with fibromyalgia can have good days and bad days. On a good day it is important to pace yourself; overdoing it may simply make matters worse. Rest is also important. Listen to your body when it tells you to slow down.

 

TheAuthor profile image
TheAuthor

Hi Vickylou26

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read that you are suffering and struggling and I sincerely hope that you can find some resolution and relief to your issues. The official medical thinking is that Fibro is not an inflammatory illness, so Naproxen should not really help with the pain of Fibro.

I personally have a TENS Machine which I find quite useful, and I take a mixture of medication from Neural inhibitors such a Pregabalin and Nortriptyline. Through to Pain killers (if there is such a thing?), like Nefopam and cocodamol.

I also undertake a very gentle physiotherapy routine that takes me about 20 minutes. I also have found this extremely useful but it is advisable not to overdo things. Many members on the forum have also undertaken a course of CBT, which they have found very useful as well.

Since you also have a thyroid issue, it may be a good idea to talk to your doctor about your thyroid medication to ensure that the dose is right for you? 

It may prove beneficial to discuss these things with your GP / Medical Specialist to ascertain what they can offer you? I want to genuinely and sincerely wish you all the best of luck. Please take care of yourself.

All my hopes and dreams for you

Ken

 

Vickylou26 profile image
Vickylou26 in reply toTheAuthor

Hi Ken

Thank you for the message. 

Regarding my thyroid I had bloods taken on Thursday with the rheumatologist and she said she'd check my levels again as I was due a check. I'm currently taking 250mg levo a day. 

TheAuthor profile image
TheAuthor in reply toVickylou26

Good luck my friend.

newportrita profile image
newportrita

Hi I am on alot more pain relief than that, have had loads of different medication combinations, and all different doses, have been trying different ones for years, then a few weeks ago my dr told me that however many tablets I take nothing will work as there is nothing out there that helps fybromyalgia, I am comstantly in pain, 24/7 and I am really depressed I work 3hours a day cleaning, even before I go to work I am in pain, I go home and I cry almost every night, I am hoping to go to the citicens advice to find out if I can go on the sick, or how bad off money wise I would be if I didnt work. I hope you get your fybro sorted, I wish you luck.

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