Fibromyalgia: In my opinion... - Fibromyalgia Acti...

Fibromyalgia Action UK

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shanie54 profile image

In my opinion Fibromyalgia does get worse over time. Here is the thing, this is a disorder that up until 35 years ago was considered a psychological problem with no physiological basis. Then our expert medical professionals decided maybe there is something to this. I know this because I am a trained Mental Heath counselor with a Master's degree in the field. I was diagnosed about 30 years ago with Fibromyalgia. That is after they tried to tell me before the diagnosis, when I would go with complaints to my doctor, that I needed a good psychiatrist. Then, when they finally decided I had fibromyalgia, they said it could only affect my shoulders and upper body. I disagreed with them and said it affected my whole body and I believed it was neurologically based. Years later, guess what, I was right. Now they know that. So now they are saying it is not progressive. Well I promise you in a few years they will discover it is progressive. I can tell them from personal experience it is. Further more, they will discover that there are many other sensations and symptoms that they say don't exist now but I, from personal experience say there are. For instance, my skin burns and crawls. They can find no reason for this physiologically but I believe it is the fibromyalgia. So when the doctors disagree with you argue your point. They will find out sooner or later.

32 Replies

I agree, in fact I am seen by a neurologist periodically, unfortunately many are still struggling to be treated properly. Lou x

I hope they do more research on it

Exactly right! It is even more annoying when you come across a doctor who still isn't up to date and insists that it is a psychological problem. 😐

A doctor recently told me it was all a sensory problem

I've always been told it's for life but doesn't progress so every year I get more symptoms every flare/relapse is worse than the last one in my eyes that is the fibro progressing so I firmly believe everything we as the patient already know I agree in time the so called experts will be saying the same 😡

Couldn't agree more, shanie54. Eleven years ago I started to have pain in my arms and thighs - now I'm housebound and have difficulty walking even indoors. It seems that every flare up leaves me worse than before. It would be good if doctors listened instead of treating us like hypochondriacs!

Totally agree. Mine has got worse

I agree wholeheartedly. My symptoms have definately got worse, I was officially diagnosed 4 years ago but I am sure I have had fibro for much longer.

Yes it's a continual decline 😕 Always trying to still be independent but I'm giving in and trying to be kinder to my body. I'm lucky that my son helps lots but I fear that the medics are still trying to push exercise regimes on me ignoring the fact that my body is screaming at me to stop after just holding an empty shopping basket or when I'm always looking for the nearest chair because the fatigue tells me I can't just stand ! I would appreciate it lots if they just said that they know I'm in a lot of pain etc but that at present they don't fully understand it. I once met a GP who told me that she just didn't know why I had a particular symptom which I thought was awesome as most have to come up with theories as answers and these can be damaging when relating us to for instance someone with depression. Medicine is not an exact science, I thought it was so welcomed this bit of info from a nurse friend. Rabbled on for too long now 👋🙄

Hi shanie54,

I agree wholeheartedly with what you say.

Like yourself I have worked in the Medical field for most of my life. Most Drs don't like it when they come across someone with symptoms which can't be explained with a blood test or other diagnostic procedure. Their reaction to the patient is either "we will do everything to get to the bottom of this" and sometimes they do, or " we have done all the tests and nothing shows up" so therefore it's Physchological.

My personal opinion is that it is Neurological. I get strange sensations in my skin like burning and numbness, crawling sensations, and stabbing sensations. If I had to pay a visit to my GP everytime I had these, I would never be away from the surgery. The very fact that they prescribe Pregablin and Gabapentin tablets (anti-epileptics) off label, for Neuropathic symptoms, proves this.

I just hope that someone somewhere in the world is doing research, and will come up with something that the Medical Profession will agree on, and then while we all wait for it to filter down through the ranks, we will get listened to, and treated for the disabling condition that Fibromyalgia is.

Thanks for posting this, very interesting.

Enjoy your day whatever you're doing.

GP. 😊😊

Clara27 profile image
Clara27 in reply to Greenpeace

Hi Greenpeace, I'm to the point that if I get a job sitting for a while, walking or physically I won't make it bcz of my Fibro. Now Im wondering how easy it hard is it to get SSI? I'm getting so irritated with all theses Meds, no insurance as of 6/2016 and no Drs understand unless you have to push the issue and make them understand.

I agree 8 years ago I had a car crash I started on paracetomiol now on morphine and garbapentin amongst others then somewhere along the line depression and chronic fatigue joined in, I'v worked my job 16 years, I'v now after being harassed and pushed which forced me into long term sick as I couldn't cope mentally or physically begged my doctor to write a letter saying I can no longer work there that I won't be fit to work again if ever

I totally agree shainie54.its like athritis.gets worse with age!! Its obvious reall isnt it? People have to experience it to know what its like!!

Dizzytwo profile image

Yes for many it can be progressive but like the illnesses it's self it may not be progressive for everyone. I know many with Fibro who still hold down a full time job and have a weekly exercise program at the gym would you believe. But they do get their bad days too. So for them it does not seemed to have progressed.

I was told it could progress, stay the same or even get bettet!! I think it is different for everyone.

As for me it as had me in a wheel chair for the last 15 years. So in my case I would say it as definitely progressed.


It's not that it has to get progressively worse in way it effect's use as what's around it changes/becomes weaker.

Take a sledgehammer and a house both seem ok now swing the sledgehammer around every day for a month then take a look at it has it changed? well has marks&bit's missing on shaft so a little but the house is wrecked water gets in so damages many things,always cold as gaps/cracks in walls etc then creatures can invade house through gaps/cracks where as before house was secure.

Not much to sit on so uncomfortable to live in and bedroom is wrecked so hardly any sleep and so and so onwards etc in the end house will collapse if kept doing it.

That's the part they don't understand mind many Quacks don't understand much apart from £78 please NHS next please!

Did you read about the GP they let die as she knew had cancer and they said "Present difficult symptoms!" "emotional instability"

Until fairly recently, a lot of FM patients would have been diagnosed with hypothroidism.

I self-treat for this, with the knowledge of my GP, & have alleviated most of my symptoms.

Unfortunately, pharmaceutical companies don't make much money from selling cheap thyroid medication, & must make billions from the range of drugs prescribed to FM sufferers, that don't work.

jcnps profile image
jcnps in reply to BadHare

I have been diagnosed with ME/CFS and FM and was also treated for borderline hypothyroidism until a few months ago when feeling even worse blood test revealed was being overdosed with medication so stopped it altogether and thyroid now functioning well, co-incidentally cholestral levels and blood glucose levels now dropped to well within normal....but weight gone up and legs/feet pain worse. I persevere with thought that there will eventually be appropriate treatment when they figure out what is really going on!!

Might no be within my life time though.....

It is definitely progressive; in six years I have gone from walking occasionally with a stick to wheelchair, My breathing has deteriorated, I'm losing strength in my arms and hands to the point that it is dangerous for me to handle sharp knives, I can't hold my crochet hooks for more than a few minutes at a time, my eyesight is deteriorating quickly even after cataract surgery. I cannot go out alone and I need to find an adaptable bungalow, as my house is totally unsuitable for my needs, and cannot be adapted.

oscarbravo profile image
oscarbravo in reply to Midori

I'm having breathing issues get thick stuff coming up often to plus yellow bits keep telling me have blood clot sign in test but they think to do with Raynauds but quack don't want to refer me to Raynauds clinic!

I agree in 12 months I've gone from walking slow with no aid the walking with stick then wheelchair/scooter before Xmas I could walk with stick/crutches to get my weekly shop now I either send oh or I go in my wheelchair it really does go worse ☺

shanie54 ,I must say that I do agree with yoh.I was diagnosed in 1999 and I will say my symptoms have gotten worse more so in past say 3 years.I do understand we get older as well but there is more to it than age.Hope you have a good day. Peck🐤

stargirl47 profile image
stargirl47 in reply to peck

Hello peck hope you are ok been a bit low the last few weeks so not been around much hope you are doing ok my friend how is the weather over there cooler for you I hope :-)

hugs sarah xx

And shanie54 I totally agree in the last 3 years since I had an operation I have got considerably worse more flares and more medication , makes me wonder whats to come sometimes , hope today finds you well x

peck profile image
peck in reply to stargirl47

stargirl47 , Hey my friend, I've been wondering how you were.I hate to bother you as I know you work so much you have to have some "ME" time.Glad to hear from you.Have a good day!!!your friend,Peck🐤

It's a shame that Drs don't take the time and read the books, not research the syntoms that are new to them from their patience. In Fl. In no time my Pain Management Dr did some lab work, c-scan, and with my symptom he was treating me with shots and Meds to help it kick into my body instead of taking baby steps. He knew it from the first symptom of Carpal Tunnel that I was experiencing the symptom of Fibro. I moved to NC and the Drs here are a joke. I had to start all over again because you have to go from one Dr to another (like baby steps) even when I was seeing a Orthopedit Dr they went thru this process of giving me shot on the side of my left hip where it was hurting and it would hurt from the bone being worn out. The shots on the side didn't work, I had Cordisone shot straight down both of my hip and still didn't work. Finally I got mad and saw a Pain a Management out of the Cone Health Physicians. This Dr was telling me to do Tip toe walks, walk on my heels, stretch, and all that crap. Once he received a feed back from my MRI on my back he knew than my problems but didn't acknowledge my Fibro. Sorry for the long story but Dr's do sucks and don't want to hear their/ people symptoms and do research instead of playing a guessing game. What part they don't understand when we are in Physical pain NOT mentally pain. They give you the Meds that they think will help when on the meantime I tried to tell them the Meds that I was taking and helping me in Fl. But noooo they start you with Mickey Mouse waste of money Meds that doesn't work. Now, after a couple of months they are requesting my medical charts from my Drs in Fl. In NC it's a damn joke when it comes to Pain Meds, muscle pains, migraine headaches, and for them to give it to you is a process. Now I had to resigned from my job and have no health insurance. Now that I have to pay out of pocket to see a Dr they hear you out because $ talks and they hear you out. I'm so disappointed with all these crappy a** Drs. The only I'm pain free is when I'm in bed and I hate it. This is why I go on car rides with my daughter, window shop or visit family members which is only 2 households. What keeps me going are my two 4 months old black labs mix with chow chow that weights almost 30 lbs. Animals are the best Meds for me

I agree it goes get worse i feel my boddy and brain deterating. And thers nothing i can do about it x

thats how mine was diagnosed -crawling skin,and i have got progressively worse since 2012 -i still think it is something more than fibro cos of sudden onset and worsening symptoms

Definitely got worse as I've got older as has my arthritis .

Definitely agree it worsens, doctors think i've had it for five plus years, but only because i was getting worse health wise, it was finally diagnosed. Even in the last 6 months my ability to do things has deteriorated really rapidly, despite trying to exercise etc as advised.

Hi shanie54

I am a big believer in keeping my muscles and body as active as I physically can without instigating a bad flare up. I believe that our muscles get weaker if we do not use them and then the pain becomes all the more as it is more effort to undertake the most simplest of tasks.

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you


Dizzytwo profile image
DizzytwoModerator in reply to TheAuthor

I have to agree @Author about trying to keep the muscles as strong as we can. I am not always sure it is the fibro that as progressed but the lack of using our muscles. The less we do the weaker we become. The weaker we become the less we do a viscous circle as we all know . This can also effect the eyes as I know only too well. If you are only using your eye sight in doors because you can't get out to give them more exercise they become weak over time just like every other part of the body.

So yes I can see where some form of exercise would be of benefit. If it's only walking to the bottom of the garden and back a few times a day it is surely better than nothing. At least it may help our muscles from completely ceasing up.


Well well

I started with this dreaded Bain of my life 30 yrs ago

Same as you

I agree it has got worse,

I suddenly woke one morning with pain in my legs,

Now! There's isnt a part of my body, that's free of pain

I wish it was all in my head as that I could deal with,

I love walking but no can't , ad it causes to much pain,

If I bump my self u feel like I've been hit with a jaugernaught ,

If there is treatment please let me know as I'd do anything

Hi shannie

I have been refused Ill health retirement from the nhs due to fibromyalgia NOT being progressive.. is there any info you have found to support thi that may help me with an appeal?

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