Bobmarlee12

[Bobmarlee12]

Hello everyone, I have just joined the group 3/12/20

Have recently received results after 13years of Polymyalgia/Fibromyalgia symptoms . Been diagnosed by the Rheumatologist at our local hospital of having Fibromyalgia.

I would love to hear advice how other members manage this condition.

I attended a local Pilates class but when I have what I term flare ups ,am unable to attend. I would like to hear any exercise tips.

My main problem I struggle with is my spine condition , I only learned 2018(after spine X-ray) I have slight scoliosis of spine ,damage to 4 lumbar discs.plus the fatigue symptoms I struggle when walking doing shopping,housework, general on my feet after a short while.This has caused me problems when outside. Any one else experience this .

I am a social ,pensioner, with lovely friends in my life who I enjoyed going out with them but now struggle with my mobility . I have been on Amitriptyline/codeine&paracetamol,diazepam formuscle spasm flare ups .Sleep problems (thankfully I read a lot) obviously as you all know doesn’t help. Lastly the brain fog frightened Me (obviously retired health support worker in dementia care) was very relieved when I was told one of Fibromyalgia symptoms. Thankyou for the posts I have read ,realise know I am not alone ,and some members are younger than me have to struggle balancing work ,family life,at least I can rest when need to .

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org

[Bobmarlee12 in reply to Hazel_Angelstar]

Thankyou have had some really helpful posts and cheered me up .

[Hidden]

Morning Bobmarlee

Firstly who doesn't love a bit of Bob Marley this is probably where you tell me it's your name and not a homage to the singer 😉

I too have slight scoliosis and prolapse in C5/C6 and various other bits.

Wow you have asked the most asked question, how do you manage Fibro well firstly everyone is different and I am sure lots of people with have tips for you. I am just going to give you what works for me.

Firstly and more importantly learn the word NO, this was probably the hardest lesson that I had to learn I would push and push myself and then have probably the worst days ever.

Pacing, the fatigue is terrible so learning to not clean the house, walk the dog, cook the tea all in one day because as sure as eggs is eggs it will have a detrimental affect on your week.

I have found that gentle stretching in the morning yoga for Fibromyalgia is excellent and can be found on Youtube you can do this either sitting on a chair or standing just as well as sitting on the floor if you are able.

Mindfullness not for everyone but I find it helps me also calming apps are great if you need a reset.

I take pregabalin, duloxetine, cocodamol and amitriptyline i have tried without and unfortunately I am worse so finding the right combination is essential.

I have horrendous brain fog so much that I couldn't find the milk that's because it was in the dishwasher, I write everything down at work and leave little notes for myself on the fridge and my phone, especially if you have a hair appointment etc.

I really hope the above goes some way to helping, but please just ask we are all here to help and support you.

Panda

🐼🥰

[Bobmarlee12 in reply to Hidden]

helloPanda1968, lovely to hear from youI’ve noted down the meds Pregabalin,and duloxetine you’re on so I will be able to see what the Rheumatologist I see in 6 weeks prescribes with just being diagnosed I had Prednisolone in case it was Polymyalgia.

Everything you’ve said relates to me.Feeling guilty about not being able to do what I used to. So Thankyou.

Also Bobmarleedon is a combination of my love of soul and Motown music ,and Family names

[Hidden in reply to Bobmarlee12]

Oh please let me know how you get on x

[Mollie22]

Hi Bobmarlee12 and welcome I'm quite new to .The groups helped me alot as we are all similar. I was diagnosed with fibro in 2919 after 20yrs with different pains all over . Prolapse in c56 and c67 . Also s1 L5 got to see Neroligist soon. Hopefully will get the right med. My mri came back with scoliosis to. I understand what you mean about housework walking dog etc. Feet and knees in pain. Soon as I lie down back gets worse head and face pain. My neck gets swollen to as day goes on. I do gentle exercise when I can. My dogs my exercise . I have 5 grandchildren who keep me happy but with covid not able to see them. I felt reading your posts helped me as I find it hard sometimes. But we just get use to the pain. One of my daughters was diagnosed with fibro before I was she was 34 . Take care Xx

[Bobmarlee12 in reply to Mollie22]

HiMollie22 thanks for message, it means so much actually hearing off Someone who knows what it’s like, Has I said in my post I really feel for people like your daughter diagnosed so young.At least I managed to carry on working until my retirement but I struggled ,and like I’ve said fealt guilty because I know people didn’t understand. I have always been there for my friends but I can’t keep up with them now ,as you know the fatigue and flare ups take over.My neck bothers me a lot especially in bed and my back is worse.Have you had injections for your back ,I ask because when I saw neurologist he mentioned surgery (apparently for-my bottom four discs) which I declined,so I am on list for steroid injections and also r/hip bursitis.Again Covid allowing. Carry on enjoy your grandchildren (I haven’t any)we have one Son .Loved hearing from take care x

[Mollie22]

Pandas posts help me alot to x

[Mollie22]

Hi Bobmarlee12 I've had injections year's ago in top of neck they helped me a little. I'm waiting to get them in my left knee. Covid allowing.I've never seen a Neurologist yet but I have a appointment in a few weeks for my spine. Don't know what they will say. What was your appointment like i dont know what to expect. The doctor said they might be able to op.

Don't really want op a Yr and half ago had op on left shoulder and left knee . Helped a little but both not great. Hope you don't have to wait to long for your injections x

[Bobmarlee12 in reply to Mollie22]

Hi Mollie 22 this last consultation with Rheumatologist was better than previous one ,He listened more and examined Me.Previous one fobbed me off said I had just got after flu viral syndrome came home upset.Then when I was so fed up feeling no better, I went back to my Doctor who referred me again. I hope you go on ok, but if you don’t feel like you were treated right ask to be referred again. The pain management clinic who are going to treat me with steroid injections for spine and right hip,also suggested referring me to surgical team for discs surgery but I declined saying I would like to see if I could cope first without surgery. By the way clinic from Rheumatologist rang me to arrange phone consultation about how I’d been since they had seen me . Keep me posted best wishes x