Fibromyalgia

debbiedo49

I would like to know can people recover from fibromyalgia please? Is it a lifelong condition? What's people's views and experiences please?

markyboy

The simple answer is NO it is a lifelong condition but you can have good days and bad and is not helped by stress 

ColleenMarsh

Hi I have Fibroyalgia and have had more flares than I have ever had since last year. In my experience I have been told that this is a lifelong condition and to live with it. I am on medication which on really bad days don't work. Everyone is different and each of us this condition affects us in different ways. xxx

steve51

Hi @ColleenMarsh

Welcome 🌝 🌝 🌝 🌝 🌝 

I have had "Chronic Pain 24 /7" since 2005.

This came about when I was given SRS Treatment on the Base off my Brain. 

I am currently on max doses of my meds which include  "Morphine Patches" 

No  "Good" 

I have now been given "stronger " Patches. 

Still no  "Good"

I have also been too endless "Pain Clinics" 

Still no "Good" 

Seen more "Pain Consultants" than had "Hot 🔥 Dinners!!!!

Still no" Good"

Been to the "House of Commons" 

Still no "Good" 

Been to a CRPS Hospital in Bristol. 

Still no "Good"

Yes I Think 🤔 it's going to be with me for "Life"

Mind you it's time for the "Thinking Cap"

@steve51

debbiedo49

Hi folks I've had chronic pain for years triggered by trauma and was diagnosed with fibromyalgia last year. I'm asking because I think it's a life long condition but I'm not sure so I'm asking the community.  If you go online there is always something or someone proclaiming to know the miracle cure. But on here it's real people with real experiences. Also if anyone here has advice on managing it better for them then I would like to know how please. I've come to terms with it, but at 50 years old I'm not giving up yet lol. It's amazing to read about how treatments vary widely.

marmalade

Hi sadly it is a lifelong condition but there things that help.  Losing weight if you need to.  (Still working on that one) do whatever exercise you can.  Conserve your energy and plan your day.  Meds have different effects for everyone so thats a journey you may have to take yourself.  Yin yoga and pilates are very good so is swimming but again need to manage this.  
I use a power wheelchair if i am gonna be out and about for any length of time this helps conserve energy and minimise my pain.  I always make sure i stretch and move around when i come out of it.
Every fay is different and then you have the flare ups on top of that.  It really is a juggli g act but understanding yourself and how it impacts you will definitley help.  Get a referall to an OT they can be super helpful as can physiotherapist.  Let us know how you get on  

debbiedo49

Thanks I've been to physio who said they are not trained for fibromyalgia but can help with symptoms that can be labelled like sciatica, stiff neck eyptc. In my case I felt it was a box ticking exercise. I had 4 sessions including assessment for sciatica. I felt like a fraud for saying fibromyalgia and them not recognising it. How can they treat you for symptoms without this knowledge? It did help my xciatica though. Next I  have podiatry for symptoms of plantar fascistic which I've had before years sago but not to this extreme. It may be something else. I go next week. As usual self referral and onths of waiting on NHS. I have really bad neck and shoulder stiffness which is probably arthritis and I probably should get physio for again a self referral.. That's all my g p does for me meds or self referral to physio etc. 

MKMale

Hello @debbiedo49
I have had Our Fun Filled Friend Fibromyalgia since 1999/2000 and I hope it is curable and not a life long condition ... However I been on C.B.T Course, a Chronic Pain Management Course as well as Chronic Fatigue Management Course and kucky enough to have an exceptional G.P and Senior Consultant who headed up a team of excellence regarding Fibromyalgia and C.F.S/M.E so far I have yet to meet someone, and I don't remember anyone else who has. Everyone/Everything I have believe it is lifelong. It had completely destroyed my life and left me with nothing except ever present pain....
Magic Beans and Giant Beanstalk spring to mind when I hear/read about a cure..... But who knows there is always hope and dreams .. Maybe, just maybe one day...
Hope today finds you a little better than yesterday.
Blessings Be
X

ncps

I have fun to and hold meetings for people affected by Chronic pain all over Northamptonshire, check out the website or th page www.ncpsuk.com

debbiedo49

I’ve just got my heel bursitis diagnosed by podiatry today. Looking it up it can be linked to arthritis which I think I have undiagnosed. They suggested ibuprofen gel for 2 weeks and give it 8 weeks to recover. I’ve had it for a year so I know it’s not going to recover just like that.  Blooming useless nhs podiatry. I said what else can bd done like ultrasound or injections. They said no injections can cause damage anc ultrasound doesn’t work. That’s funny cause it worked years ago when I had it and I got ultrasound. Looked it up and the web site recommends ultrasound and steroid injections as treatment. 
I don’t know if others with fibro get these issues?

About

marmalade

Hi @debbiedo49
I don't have bursitis but i do get a lot of pain in my feet.  It got so bad I insisted on a x-ray cos i was convinced I was walking on broken bones.  When your feet hurt everything hurts.
I would bypass podiatrist and soeak with your GO and get your ultrasound and injections that way.  Maybe the podiatrist is not up to date or their website isn't but definitely worth a second opinion.  Let us know how you get on.

debbiedo49

Well tbh I went to my gp first who told me to self refer to physio and podiatry and when I asked about the injections he said no he doesn't do them as they hit n miss and that other doctors do them by choice or not. Physio did same same thing they don't use ultrasound for it anymore. I suspect it's cutbacks as I didn't see any of the specialist beds or equipment I saw before. I think they are told to say it doesn't work. Physio and podiatry were barely interested in my issues.

debbiedo49

Just heard fibro has been classed as a lifelong disability today at parliament 

marmalade

Oh wow that's awesome so glad to hear that.  Hopefully this will prevent the fight to get recognised thanks for posting @debbiedo49

debbiedo49

https://parliamentlive.tv/event/index/4f090137-2b52-4604-9fff-c6e4c2a19336

gjb80

I have fibro too, along with a bunch of other neurological disorders. It sucks. And even though it is a life long condition you can have periods of remission that can last for years. I have found that the right meds, alongside managing my diet better, sticking to a strict sleep routine and forcing myself to exercise regularly really helps. I still have regular flares, fatigue and plenty of joint pain but it's not as bad as it can be if I neglect my routine.

Pippa_Scope

Welcome to the community @gjb80, and thanks for sharing your experiences with us!

debbiedo49

gjb80 said:

I have fibro too, along with a bunch of other neurological disorders. It sucks. And even though it is a life long condition you can have periods of remission that can last for years. I have found that the right meds, alongside managing my diet better, sticking to a strict sleep routine and forcing myself to exercise regularly really helps. I still have regular flares, fatigue and plenty of joint pain but it's not as bad as it can be if I neglect my routine.

What kind of things would you recommend? 

debbiedo49

Hi how’s everyone doing?

Chloe_Scope

I'm very well thank you! It was nice to have some extra relaxing over the bank holiday. How are you doing @debbiedo49?

debbiedo49

I’m okay thanks we didn’t have a bank holiday in Scotland x

Chloe_Scope

Ah okay! That makes sense @debbiedo49, sorry about that one! Hope you have a lovely day today.

debbiedo49

How are my fibro friends?

debbiedo49

😩

marmalade

Fighting tooth and nail with DWP but it's getting weary now 

Chloe_Scope

Hi @debbiedo49, how are you doing today? It looks like you had a hard day yesterday.

debbiedo49

Bit better thanks how are you @Chloe_Scope?

debbiedo49

marmalade said:

Fighting tooth and nail with DWP but it's getting weary now 

What stage are you at? 

marmalade

I went to tribunal but they adjourned my hearing because they said I did not have enough evidence.  But the judge stopped short of calling me a liar and said that I had credibility issues and that fibromyalgia was based on credibility.  So I have made a formal complaint.  And now gathering up all the information I need for round two.  But given the way I was treated I do not feel like putting myself through it again.

debbiedo49

@marmalade something like that happened to me with sea at tribunal. I felt that the"doctor" on the panel was a dinosaur and at that time I was focusing more on my mental health issues with my chronic pain ( undiagnosed fibro). My cab advisor did not contribute. I felt unfairly dismissed and devastated at the refusal. At the time I had been on the sea merry-go-round too long and gave up. Had I the support I deserved and needed at the time I would have put in a complaint but my cab advisor person wrongly advised me I could go no further. With pip and coming on this site I feel much better informed and have some idea how things can go so I try to switch off from it and expect nothing. I'm getting help from wro but they have stopped attending with folks as well now. So I'm trying to focus on what I know rather than my fear of the process. What I think is you have to believe in yourself and you have to prove to them you are entitled to the benefit. It's like they sense your doubt and go in when you are vulnerable. That's my feeling anyway. I'm sorry you are going through this but if you feel you are being treated unfairly then you should keep going. Have you tried getting your mp involved? 

marmalade

I have now engaged a representative so that should help. The biggest thing for me was getting access to my power hair, which I purchased myself because that's my life line that's what keeps this condition from consuming my life.  I have now purchased a hoist for my car and changed my car to an automatic.  But it's a disgrace I have had to do all.of this for myself.  The attitudes and views on this condition is archaic and arrogant.  It's like banging your head off a brick wall.  But at least I can hold my head up

debbiedo49

Good for you ! 
@marmalade

Chloe_Scope

I'm good thank you @debbiedo49! How are you today?

debbiedo49

Better thanks and back at work. Tired legs 😝 

g1gop

Hi amongst other things , I have fibro. My Dr's are great and very understanding but I would like some advice please.

Day to day I have learnt ways to adapt to the pain and other problems. I cannot do much or work but I bumble along at a low level and have a life.

what I need advice with are days/times when I have a flair up.

My fibro is classed as 'extreme'. My pain is in many levels. First is arthritis like pain in joints and muscles (cross between arthritis and starting real flue). Then I have the random very intense pains that happen throughout the day at any place on my body and at any time. That one can catch me out. Usually they last only up to about an hour (things like feeling my ankle is broken/some one has stabbed me/ I am on fire (literally)/having a heart attack/etc These after five years of I have come to 'deal (as much as you ever can) with..

The pain that floors me is when my whole body just 'explodes'  There is no way to describe the intense pain or 'shock' I feel.

Often the only way I can get through these periods is to somehow get to sleep and hope that it resets when I wake. Obviously getting to sleep when you feel like your whole body is on fire and your skin is dripping off you or that some one is  ripping your body to bits is the problem. I have various painkillers up to Tapentadol. Yet when a flair happens I have maxed out (and often gone well past safe levels) to try to cope. Fortunately this state does not happen often(hey the rest is bad enough! lol).

So Any ideas/suggestions on being able to get it under control?

Yes an impossible question but open to suggestions.

Please dont do the 'try going for a walk' etc. Physical activity is a non starter (for reasons I wont bother you with).

Listening to music/etc does not work (remember this is off the scale  very intense pain).

Tried all the usual meds for fibro and non worked.

As I say For everyday stuff I have an 'uneasy truce' with the pain and fog etc.

No its the 'all out war' times I am sinking and need help.

alan

Adrian_Scope

Hi @g1gop. I'm really sorry to read this. It sounds horrendous. As we're not medical professionals here, we won't be able to advise you, but perhaps @ClaireSaul might be able to make a suggestion?

debbiedo49

Hi @g1gop you could be talking about me with your comments. I have fibro too and it’s hard. 
Yesterday I had f2f pip assessment which involves me travelling into town by taxi and should have got taxi home. However, feeling brave with my son I decided to take train home at 5 pm from a busy station and didn’t get a seat. So the journey takes 15-20 minutes and by that time my lower body has seized up in an awkward position and I can barely move my joints. As it’s been years since I’ve been on a train it was really stupid of me and I was taken aback by how much fibro has affected me in this way. 
The other factor was it’s a lot of money for taxis and I would have to wait for the money back and we decided it would be nicer to treat ourselves to some takeout food. Again, the station is the nearest place to us to get out takeout food from a specific place and I wanted to treat us after the horrendous ordeal of the assessment.  
You have to take your fun where you find it lol. 
So im not sure if talking to others helps you or not but that’s why there are threads like this on here. 
I’m happy to accept messages as well if you wish to talk privately. 
Take care
Debbie

mrbuttons

I was diagnosed almost 20 yrs ago and have had symptoms every day since then. some days are less bad but all days are painful in some way. Painkillers don't really help, they just take the edge of the worst off it.

the best thing I have found is to not try to battle through the frequent flare-ups but to rest, rest, rest. trying to ignore the symptoms will only prolong the flare-up as will having too much stress in your life. stress in life is inevitable but its how we respond to it that makes the difference. I tend to withdraw from the world and stay in bed. I know everyone doesn't have that luxury but its the only thing that works for me.

I have come to accept it as a part of my life. sometimes I can predict when I will have a flare-up: after periods of insomnia, days of exertion, stress, poor diet, being overweight, anxiety, other health conditions, depression. I have found that acidic foods such as tomatoes/citrus/ alcohol and lots of dairy products worsen my symptoms. apparently cranberries and cherries are effective anti-inflammatory foods and are said to help. warm baths and electric blankets are great for relaxing the muscles also any medication that promotes sleep by relaxing muscles. there is one thing I used when younger which I can't use now, it has been legalised for some MS  patients, but unfairly, not fibromyalgia. I won't name it because it's still illegal, but I'm sure you can guess.

this is just my experience I hope this info is helpful to others

[Deleted User]

The user and all related content has been deleted.

Chloe_Scope

Hi @g1gop, how are you getting on at the moment?

g1gop

Rough this week. Thanks for asking. The change in weather affects me a lot. Picking up today though. Had a lot of sleep apart from one day when I woke at 2AM and couldn't get back to sleep.

Alan

Chloe_Scope

Sorry to hear this @g1gop, I can relate to the weather affecting pain! I'm glad you are picking up today and are able to get in some more rest.

deb74

I am never sure from one day to the next what fibromyalgia will throw at me. Some days are not too bad but others are horrendous! one of the worst symptoms for me is shaking it is so frustrating when you can't do anything because you are shaking! I have wrist straps with metal plates in them that help stop my hands from shaking but I quite often have body jerks which I can't control! but the weirdest symptom I have had is temporary paralysis, it doesn't last for long but is so frustrating

Chloe_Scope

This sounds extremely frustrating and unknown @deb74, how are you today?

deb74

hi Chloe_Scope. I felt really rubbish earlier. I was really weak and I went to bed two and a half hours after I had got up which I never do. was shaking really badly so wore straps for a bit. Eventually found the energy to take the dog for a walk and don't feel too bad now thank goodness! I looked up the paralysis and it is quite a rear symptom of fibromyalgia.

Chloe_Scope

Sounds like you've had a bit of a fight with your own body @deb74! I'm really glad you don't feel as bad now. It's so important to know when to rest and there is nothing wrong with doing that.

deb74

Hi Chloe_scope. I think I will start to go to bed for a couple of hour in the afternoon. I seem to start to get really tired about 3pm. Still shaking a bit but nothing compared to this morning.

deb74

looks like I am going to have a bad day again! having to use left hand for everything this morning my right arm keeps going numb and the tremors have started had a bad night last night couldn't sleep!

deb74

Now looking at it possibly being ms and not fibro. All of the weird symptoms seem to fit. Going to make an appointment tomorrow to see the dr. I have been meaning to go back to the drs for a while but I thought I might be wasting his time. I think I need to talk to him now. It is taking over my life completely now!

deb74

Should have mentioned this was not done by using dr google I went on the ms society website. I never trust google for diagnosing symptoms!

Adrian_Scope

I hope you manage to get in to see your doctor today @deb74 and they're able to discuss your concerns with you. 

deb74

Hi Adrian_Scope. I will be going to the drs in a bit to make an appointment (need to go before 1pm because they close on Monday afternoon). feeling too wobbly at the moment. Had a bad night last night which is weird because I felt ok yesterday. Went into to full spasms my whole body was jerking violently took ages to fall asleep. Been using my crutches his morning so I didn't fall over! Wil probably have to wait till after Christmas to see my doctor. I think I need to see him and not another doctor as he is the one who has been dealing with all of this.

deb74

Hi Adrian_Scope. Made an appointment to see the dr. I have got an appointment on January 10th.

Chloe_Scope

Hi @deb74, sorry I missed your earlier messages! I'm sorry to hear that you've been having some really difficult days. I really hope the GP listens and is able to support you. Wishing you a lovely Christmas.

deb74

Hi chloe_Scope. I think the symptoms are too weird to be fibro. As for my dr listening he is brilliant not like my old doctor he really takes me seriously. Hope you have a great Christmas!

Adrian_Scope

I'm glad you managed to get an appointment @deb74 but I'm sorry it's still a bit of a wait. It's great you've got a good doctor though, he sounds worth the wait!
I hope you have a lovely Christmas.

Chloe_Scope

Really glad you have a doctor who will listen! Have a great Christmas @deb74.

deb74

Hi Adrian_Scope. The dr is definatley worth the wait. He is brilliant! Have a great Christmas!

deb74

Went to see the dr yesterday. Don't know why I bothered He said why have you come to see me, what do you expect to get out of it? He said the list of symptoms you are showing me isn't much different to the last list you showed me. He insisted he was listening to me and taking me seriously and he wants to see me in two months time to see how I am getting on. I walked out of the surgery feeling a bit disappointed with the way he reacted though.  

marmalade

Yeah it's very difficult when they treat you like that. I was told I would just have to learn to live with the pain. Charming. Are you on anything just now? 

deb74

Hi marmalade. I don't take anything apart from ibuprofen pills when I need them. Last time I went to see the doctor which was in May last year he seemed to take me a lot more seriously. Yesterday I felt like I was wasting his time. He said I was concentrating too much on the symptoms but when you start to fall over because you lose your balance or go into paralysis from the neck down you are going to take it seriously!

marmalade

That's awful. I think you need a second opinion. I am assuming that you have been tested for all conditions and they have all been ruled out? I started with just taking ibrufen and it worked for a year or two but I was in full time uni and wanted to keep going and I was working too so it wasn't enough so I am now on pregablin, amitriptyline and naproxen or cocodomol. Last two I take when I am particularly sore or when I have a flair up. Is there another doctor in the surgery you could speak to? I had to speak to the main doctor and make a complaint before I was taken seriously.  It's a bad enough condition to live with without being made to feel like that.

deb74

Hi @marmalade. He is the second doctor I have seen. I used to go to another surgery but the doctors there were useless. The doctor I saw on Thursday was the one who diagnosed me with fibro and ME. The doctor I saw at the other surgery accused me of making it up. Most of the people I know with fibro have just been left to get on with it by their doctors. As for being tested when I first went to the doctors with pins and needles and aching in my fingers he said it might be arthritis so I had an x-ray and a blood test which showed nothing then I had an mri and nerve conduction test in case it was carpel tunnel or a trapped nerve. Then things got worse and I was getting lots of symptoms so I went back. I had another couple of blood tests and talked to the doctor about the symptoms and he said I had ME and fibro.

ricky1040

Hey i am diagnosed with fibro also. 5 years since this and its still happening. Its not a nice experience but you have to do your best to enjoy the good days and do what u can to minimise the flare ups. Seems everyone has their own journey with it. For me doing exercise as little or as much as i can do helps me. I try and eat healthish and do lots of stretching. I was on opiods but i got dependant on them and their effectivness started to wain. Currently trying my best to stay off pain killers but take cocodamol 30s at night in absolutely necessary. 

But its kind of trial and error. Ull find ur way. 

deb74

hi ricky1040. Felt a bit wobbly on Friday morning and was on the crutches for a bit until I got going. Wasn't too bad yesterday. I went to see my aunt who has just been diagnosed with cancer. This made me realise how lucky I am! The annoying thing with fibro is not knowing what you will be like from one day to the next, but we all know that.

jotom2269

Hi @deb74 I'm a fellow fibromyalgia suffer and also suffer with tremors and numbness, my fingers are the worse and I have little or no sensory feeling in theM whatsoever for the best part of a year now.At first I found it very inconvenient and frustrating. My GP sent me for the same nerve testing to rule out carpal tunnel but that came back fine. However, my B12 was really low, since starting B12 injections back in October last year these symptoms have improved and I was advised to take vitamin D tablets at the pain management clinic that I attend for fibromyalgia and ME. Hope today hasn’t been too bad for you

deb74

Hi jotom2269. I have been ok today thanks. I have been taking vitamin b tablets for years and I also take vitamin d pills to help with my arthritis.

ricky1040

U hit the nail on the head @deb74 its the unpredictability of it that gets me annoyed. I wanna make plans and do things. Also i wish i knew ahead of time when id be ok so i could start back to work again i miss it. Never thought id say that sentance but i do. But we gotta work with what we have and make the best of it. 

deb74

Hi @ricky1040. I work for myself so if I am having a bad day I can take the day off. You are right about making plans. The only thing we can do is rest before we do things and hope it works. I have worked for myself on and off since 2007. I did work in a local factory for 7 months in 2016 and I absolutely hated it! I like the freedom of working for myself.