Fibromyalgia Diagnosis. Was it a help... - Fibromyalgia Acti...

Fibromyalgia Action UK

56,280 members64,731 posts

Fibromyalgia Diagnosis. Was it a help? Or was it a hindrance?

catcalling profile image
57 Replies

Hello all.

I know the heading of my post may seem a strange one or even controversial but let me try and explain it a bit better.😜

I'm really interested to find out how others felt when they were given their diagnosis.

From my own personal experience it took a good 8 years to finally get my diagnosis, there were many times that I questioned if what I was experiencing was really happening or was it just in my head along with just getting older even though I had always referred to it as some kind of nerve pain, many blood tests came back ok, x-rays showed a little rheumatoid but not much else was coming up so I just kept on taking various meds and living with the pain.🙄

I had a discussion one evening with a few girlfriends and they asked me how would I feel if I ever got a diagnosis and it got me thinking.......Would I feel happy that I finally knew what was causing it? Or would it consume my whole life and all I would focus on was that?

Now I have that diagnosis I can confirm that it has not consumed me, I feel that I now know It's not in my head and what I experience is real and has a name but at the same time I'm interested in other people's experiences, what helps others and the various things others find helpful.

Oh and humour ....don't ever let it take that away from any of you...🤣👍😂

57 Replies
desquinn profile image
desquinnPartner

there are studies show there benefits the individual and the health service from people getting early or a

Cat00 profile image
Cat00

I diagnosed myself about 25 years ago after over 10 years of unexplained pain. I was just getting through my 4th nervous breakdown having had them through school and university. I was having untreated chronic migraines too. I found an article about fibromyalgia so printed it out and took it to the GP. They read it and said "Yeah it's probably that". So I was fairly angry to be honest. They just seemed like they couldn't be bothered to suggest it before.

desquinn profile image
desquinnPartner in reply to Cat00

15 years ago, a lot of GPs would find it a challenge to diagnose as they were and are still learning about it. Confidence levels are better now with more awareness. Thats around the same time I was diagnosed, and my GP printed out the info and said does that sound like what you are going through AND is there anything that does not tally.

This worked for me but would not for a lot of other people, I am sure. Things are getting better and with even more awareness and information they will get better still.

Cat00 profile image
Cat00 in reply to desquinn

Yes it was the same with chronic migraines, took a long time to get any doctors to believe that you could have continuous migraines. Its far better now.

I still think if I could find it they should have been able too though, I don't they believed me at all and I don't think they bothered to look for an explanation for all my problems.

desquinn profile image
desquinnPartner in reply to Cat00

there is now only a better awareness and understanding of chronic pain but also guidelines and information about fibro that was just not available to them then. In 2007 within the UK there were very few central resources. NHS evidence site (succeeded by choices) did not exist, so GPs had a mountain to climb and were searching the same sites as you if they felt inclined to find that info.

Once NHS evidence was in place things improved as patients could be pointed to this or the EULAR guidelines but apart from this there was a lack of evidence-based advice never care pathways.

Cat00 profile image
Cat00 in reply to desquinn

What is EULAR? I should just Google it really...

desquinn profile image
desquinnPartner in reply to Cat00

european league of rheumatologists

Cat00 profile image
Cat00 in reply to desquinn

Makes them sound like Super Heroes!

catcalling profile image
catcalling in reply to desquinn

Hello, thankyou for taking time to comment on my post.

Do you feel 15 years on from your own diagnosis that its easier to get a fibro diagnosis nowadays?.

I ask as to me it till seems to take many years to finally get a clear diagnosis. x

desquinn profile image
desquinnPartner in reply to catcalling

definitely. Average UK diagnosis time is 2-3 years now but was longer before and is longer average in Europe.

catcalling profile image
catcalling in reply to Cat00

Hiya and thankyou for taking the time to comment on my post.

I can only imagine how frustrating it must of been for you, and then diagnosing yourself just seems ludicrous.

Do you take any kind of medication or herbal remedies to help you now?

Can you manage your fibro well enough to date? x

Cat00 profile image
Cat00 in reply to catcalling

Well as Des says it was a long time ago, it just seems a shame I seemed to have developed a collection of conditions that were relatively unheard of. It did destroy my chances of having a functional childhood which essentially closed down a chance of having a career etc.

When the doctors did start to take me seriously the newish NICE guidance didn't exist yet so I went on quite a few medications that they don't prescribe now generally.

I had to come off all of them to have my children and realized once I'd got through withdrawal they didn't really help in the end. As time went by my attitude changed as learnt to adjust to the fact things weren't going to get any better. So i dont take anything for fibro.

So all I use now is exercise and a lot of it. I do a class at the gym everyday either cardio or weights. I swim every week and do kung fu classes 3 times a week. It really helps my mental health and gives me an outlet for my stress. I can't work but that is really more down to the chronic migraines than fibro. I find the muscle pain hard but I can push through it. I actually find all the comorbities harder to deal with than the fibro itself.

I originally found this forum through the migraine clinic. To this day I've never met anyone with migraines like mine but I know they are out there bc of this forum. It makes a huge difference to know you are not the only one and this in turn means I don't waste time searching for answers.

I think the problem with a fibro diagnosis is that to a certain extend it doesn't answer any of those questions but at least I know I'm probably not just crazy anymore.

Exercise really helps with the stiffness too and I have a hot water bottle I'm very attached to!

Tilly1957 profile image
Tilly1957 in reply to Cat00

Hi Cat00, my niece went through hell throughout school with undiagnosed fibro …..she was labelled with ‘mental health issues’ being told it was all in her head. Apart from the other debilitating symptoms, she also had the most horrendous migraines that often took days to go, (or lessen), eventually her family were so desperate, they managed to afford a session (or more, can’t recall) with a private specialist who diagnosed fibro. I can’t recall at what age this was, but as an outcome she now has regular Botox injections in her head/neck/shoulders which reduce the amount/severity/ length of migraines. She says it was a life saver for her. Once diagnosed, she was referred back through the nhs for treatment. Given that she missed so much schooling, she now has a professional job, with qualifications under her belt - I am very proud of her. Luckily, her employer understands her condition and makes allowances. Sorry for rambling, I had intended to just share the migraine info 🤗 xx

Cat00 profile image
Cat00 in reply to Tilly1957

I sympathize! Yes I went to boarding school and was labled insubordinate, lazy, rebellious even when I was less than 6 stone they didn't believe me.

I campaigned for Botox for 6 years until the NICE guidelines finally allowed it. After a few years of botox I am now on the new CGRP monoclonal antibody which is up and down in terms of relief.

I did make it to uni and graduate with a reasonably good grade but by then the damage had already been done sadly.

Tilly1957 profile image
Tilly1957 in reply to Cat00

may I ask what the ‘CGRP monoclonal antibody’ is? My niece was offered an alternative to Botox recently but couldn’t recall what it was - she chose not to change as the Botox is working well. I wonder if it is like the biologics they use for exzema? X

Cat00 profile image
Cat00 in reply to Tilly1957

It is a biological but they don't seem to share many similarities other than that. My friend is on one for arthritis which works completely from mine. The CGRP is Calcitonin Gene-Related Peptide monoclonal antibody as far as I know there are 4 available in the uk, I'm on my second one now. Each time you go on it for year.

Tilly1957 profile image
Tilly1957 in reply to Cat00

thank you x

Hi catcalling

I was diagnosed over the phone on my birthday in April. It was a relief for me to hear this as although no one ever said it I felt so lazy and useless. I feel as with so many illnesses that because you can't see it some people don't understand. I'm 53. Have a great day xx

Ladame profile image
Ladame in reply to WoodyMarleyArchie

Hi, I feel exactly the same! I feel sort of guilty saying what I have as I know it’s often thought of as one of those “all in your head » illnesses and confess I used to wonder the same thing myself at one time- perhaps getting it is my recompense ! People say « you look well » or « you look alright «  or « well you get aches and pains as you get older. ». Then I start to think am I over reacting? Should I push myself more? I seem to lurch from one thing to another. Currently undergoing tests to find out what’s going on with my intestines then feel dreadful and told I must have picked up a viral infection whilst having my colonoscopy. Then start to pick up and really bad stomach pain again and it’s a urine infection. Continually getting ulcers on my tongue and dentist can’t find any reason so doctors wondered if I could have inflammatory bowel disease. There are continually different symptoms cropping up so I suppose there’s no wonder people are a bit suspect about what I’ve got! Sorry for the rant but struggling to accept/finding it difficult to accept that now, this is how my life is. Diagnosed January 2020, started after a close friend died suddenly.

WoodyMarleyArchie profile image
WoodyMarleyArchie in reply to Ladame

Thanks for the response. I have also had a colonoscopy it was so painful. So many similar things to you. Always getting mouth ulcers they can be so painful. My mom died in 2017 she was my best friend. Although trauma from other things too. I am very sorry to hear about your close friend. Take care xx

catcalling profile image
catcalling in reply to Ladame

Hello and thank you for taking the time to comment on my post.

Firstly I'm so sorry to hear about the loss of your friend, that's always tough at any time.

Secondly you rant away, don't ever feel you have to apologise for letting off steam, we've all been there.

It sounds like you really have been through the mill and still going through it.

The more I read about people's different experiences with fibro the more confusing it seems to be.

I can only hope that eventually you get to a point where it's manageable for you to live a life where everything is under control x

Ladame profile image
Ladame in reply to catcalling

That’s really kind, thank you.

catcalling profile image
catcalling in reply to WoodyMarleyArchie

Hello and thank you for taking the time to comment on my post.

Not the best of birthday wishes hey!.

But I'm very intrigued to know how they diagnosed over the phone!?

Can you manage your fibro to date?

Just because you can't see it does not mean you aren't suffering just as much as someone who has a visible illness.

You are most definitely NOT lazy or useless x

WoodyMarleyArchie profile image
WoodyMarleyArchie in reply to catcalling

Good evening. I had an idea that I had fibromyalgia years ago but was never diagnosed with it just load of other things. I was always at the Dr's. I told him a few of my symptoms and he said fibro straight away. Funny that you should ask about managing it. I am on Celecoxib and they put me on a another antidepressant beginning with A sorry can't remember the name. Stopped taking it because I hear it was dangerous to take. The best thing is my birthday diagnosis was on April 1st 😂😂🎁🎉😁

biker888 profile image
biker888

Hi , took 20 years for me , was a big relief on one hand but a big disappointment on tuther as there was no real treatment or cure , had fibro all my life , 60 , at least we proved all those doctors wrong who treated us as if it was all in our heads, shame on them !

WoodyMarleyArchie profile image
WoodyMarleyArchie in reply to biker888

Hi so very true what you have said. Take care xx

catcalling profile image
catcalling in reply to biker888

Hello and thank you for taking the time to comment on my post.

20 years is a seriously long time to get a diagnosis.

Do you think there is a cure in this day and age?

I understand there is medication out there which can help ease the symptoms but no real cure as far as I'm aware..x

biker888 profile image
biker888 in reply to catcalling

all NHS meds do is simply dump even more toxins in the body , theres possibly some natural treatment out there just waiting to be found

Carlt profile image
Carlt in reply to biker888

"Natural" does not mean "non-toxic".

I would much rather take a medicine that has been through rigorous clinical trials, and prescribed by a medical professional over some untested, snake oil "natural" remedy peddled on the internet to vulnerable people desperate enough for a cure to be conned by "alternative" therapists.

There is a name for "alternative" medicine that works...It's "medicine".

biker888 profile image
biker888 in reply to Carlt

well keep taking the prescribed poison and put your trust in these multi million money making drug companies , its al about money not your well being !

Carlt profile image
Carlt in reply to biker888

I'm well aware of the issues around capitalism both large scale, with big pharma, and small scale with alternative "medicine".

I am also aware of the years of training that the medical profession undertakes before being allowed to practice acting as a buffer between the drug companies and the patient and also the intensive clinical trials that new medicines undergo before being approved for use.

These are safeguards that alternative "therapies" are not subject to.

The size of the scam is irrelevant.

The protection from those scams is what is important.

biker888 profile image
biker888 in reply to Carlt

and I have a lifetime of experience , perhaps you dont really have fibro ! , meds pump in more toxins , toxins cause the pain , not rocket science

Carlt profile image
Carlt in reply to biker888

I would rather you don't theorise on my condition.

You have no idea who I am and you have no right to make such assertions.

Thank you.



biker888 profile image
biker888 in reply to Carlt

oow get yooow , your the one that jumped on my thread and mocked my opinion , so go and do one !

Carlt profile image
Carlt in reply to biker888

I didn't mock it.

I offered an option that didn't warrant a personal attack.

Welshcatlady profile image
Welshcatlady

I thought I had Fibro for some time, so I listed all my symptoms and presented the list to my GP, who had recently qualified. She agreed with me that I probably had Fibro, but ordered several blood tests and x-rays to rule out other conditions, which apart from the x-rays showing osteoarthritis in hips and knees every other test was clear, so she deduced that I have Fibro. It was a relief to know that my symptoms were not all in my mind. I believe that she being a young GP and quite up to date made the diagnosis easier. So now I know what I am facing helps me to get through each day.

WoodyMarleyArchie profile image
WoodyMarleyArchie in reply to Welshcatlady

It's a relief that some Dr's are more excepting of it. Xx

catcalling profile image
catcalling in reply to Welshcatlady

Hello and thank you for commenting on my post.

It sounds like you have a very good doctor who seemed quite clued up on this.

I do think one of the biggest things is knowing that what you are experiencing is real and it's not in your head.

That for me was a big deal, I hope you have found something that helps with the numerous different things that seem to be associated with this ailment...x

Welshcatlady profile image
Welshcatlady in reply to catcalling

Thanks and yes it was great to have a GP that understood. I've since moved and the doctors at the surgery I now go to seem to be very much up to date and understanding so I am really lucky in that respect.

It's been trial and error but now take 50mg Amitriptyline at night and take Cocodomol when needed, try not to take too many as I got hooked on them and had to wean myself off them. I was taking Gabapentin but came off them as they weren't helping much. I use a magnesium spray on my legs after showering. I also have a weighted blanket which really helps me sleep. I think that's about it other than having to pace myself.

I hope you are able to find things that will help you too.

Tilly1957 profile image
Tilly1957 in reply to Welshcatlady

I have a weighted blanket - I think it’s 8kg - but I fold the corners over on my feet and legs, to just over my knees, so I guess they get about 24kg of weight. I don’t use it above my knees. The difference it makes to my sleep most nights is amazing x

Yassytina profile image
YassytinaFMA UK Volunteer

I totally agree that actually being giving the diagnosis by my GP made me feel calmer and that like you say the symptoms thay were happening were real and now I had my answers. I just got lucky eventually when my practioner nurse got me an a pointment with a different GP at our surgery who was totally aware of this condition , he did the usual blood tests too eliminate any thing else, my continuous symptoms , applied pressure on certain parts of my body which I reacted too. Previous GP didn’t explore any avenues just showed me the door with tablets for depression, I felt I’d had been struggling all that while without any real help . Got there in the end as I read here it can take awhile , like Desquinn says doctors are more aware nowadays.

WoodyMarleyArchie profile image
WoodyMarleyArchie in reply to Yassytina

Hi I agree I have been on anti depression tablets for years after my mom died I had to increase the dose but am on a lower one now.

catcalling profile image
catcalling in reply to Yassytina

Hello and thank you for commenting on my post.

It's amazing how different parts of the country work totally differently to other parts.

I saw various doctors ( over the course of many years) and not one of them ever suggested that all I was experiencing could be related to this and I was just sent out with lots of meds (pregabalin being one of them ).

It wasn't until this year that I had to go and see a ME/CFS specialist who in turn got me to see a rheumatologist that I finally got my diagnosis.

I hope now you have your diagnosis you can move forward and live a life the best that you can ..x

Tilly1957 profile image
Tilly1957 in reply to Yassytina

my first rheumatologist did this, more or less told me I must be depressed ! I tried the meds for a week then stopped - made me feel a lot worse. I dont respond well to medication for most things 🤣🤣🤣 x

LadyJoro profile image
LadyJoro

I was finally diagnosed in my early 30's

I always knew something was wrong but my GP always fobbed me off.

At the time the diagnosis was a good thing but now it's a double edged sword.

Yes I know it's not in my head but the new NICE guidelines mean that my medication regiment that was working is being taken away piece by piece

catcalling profile image
catcalling in reply to LadyJoro

Hello and thank you for commenting on my post.

As this is all new to me, I don't know what the NICE guideline is?

Why is your medication being taken away from you?

Please excuse my ignorance...x

crochetjoy profile image
crochetjoy

Hi. I think this is very topical at the moment as to whether a diagnosis helps or not.

Personally, I "stumbled" across the word fibromyalgia when doing my own research - this was about 2015, so 7 years ago. I had been attending my doctor for about 5 years off and on up til then with various symptoms. I was very frustrated at all tests showing clear yet I felt so unwell. I clearly remember thinking I must have a serious illness and crying in front of the doctor on occasion!

I started to look into all my symptoms on my own and presented my opinion to doctor. This resulted in me then having a referral to a rheumatologist and another year on waiting list for that, when it was confirmed as fibromyalgia.

So, to sum up, personally for me, I felt much better able to cope with it all when I finally received a diagnosis and I could do things to help myself.

catcalling profile image
catcalling in reply to crochetjoy

Hello and thank you for taking the time to comment on my post.

I think you sum it up perfectly when you say.. you found it easier to cope with when you got your diagnosis.

I think for so many knowing how you feel, yet having various tests done and everything coming back ok is so frustrating, I know I questioned myself so many times as to whether all of it was in my head or not.

I hope you are managing ok with it now...x

Purplebluebell profile image
Purplebluebell

Hi It was a huge relief to be diagnosed. Literally back at work in three days. I could cope with what I knew about but not when I didn't have a clue what was going on. Just getting lower and lower. After diagnosis, put on Amitriptyline and that was nearly thirty years ago.

Retiring tomorrow after actually having a life/career albeit not easy at times.

catcalling profile image
catcalling in reply to Purplebluebell

Just want to say, enjoy your retirement, you've earnt it.

i'm sure you will find time now to do all those things that you never found time for before...x

Carlt profile image
Carlt

I do wonder why, as a group of people who often feel shunned, ignored or disrespected because of our diagnosis we are just as disrespectful of other folk who suffer from mental illness.

I would be more than happy to discover that my pain is the result of mental illness and it is "all in my mind" if that lead to a therapy or medicine that actually relieved the symptoms, wherever their origin.

"All in my mind"?

Brilliant! Pass me the happy pills.

Northernnugget profile image
Northernnugget

I was diagnosed about 2 month ago and it took 2 years to get this diagnosis I'm still in the denial stage I cannont understand why the awful pain and clicking I have in my wrist isnt caused by something like arthritis or carpal tunnel Had an xray, ultrasound and an MRI on my spine and pelvis, all clear I've had a few other aches and pains and have felt generally rubbish since the start of all this but since diagnosis I've felt worse Waking up at night with numb hands which I shake out Waking up again with hand pain that I shake out again Crunching and pain in my neck, pins and needles ..........the list goes on Im using 300mg gabapentin which doesnt seem to be doing very much I'll probably stop using it as soon as there's a good time to withdraw x

catcalling profile image
catcalling in reply to Northernnugget

Hiya, thank you for taking time to comment on my post.

I'm sorry to read that you are struggling with it all at present.

You need to take one day at a time,try keeping a record of all the things which are happening, it's easier to write things down or make notes on your phone so should you need to go back to the doc's you have it all in front of you (trying to remember it all is almost impossible).

Everyone is very different and we all have various things that happen but they may not happen to anyone else, maybe you could try doing a bit of research ) there's loads of threads on here and see if you can get any info that you think may help you..

If Gabapentin isn't working for you go back to your doctors to see if they will try you on something else.

I currently am on 150mg Pregabalin in the morning and 300mg in the evening, 60-90 mg of codeine daily, Omeprazole, 400mg of ibuprofen ( only when really needed now), Promethazine ( to help me sleep).

I personally also take Vitamin D, Vitamin C shot every morning and I've now started using Magnesium Spray.

I can work, I still live a very normal life, walk my dog, go out with friends, play with my grandchildren, holidays, literally the same as anyone else.

You just need to listen to your body, if it's telling you to rest, then do it.

I hope you can find some level of pain relief that will work for you and help you live a relitively normal life...x

izzykirk3 profile image
izzykirk3

I've had Fibro since 1986 and was made to feel it was all in my mind, I got so low I suffered from a devastating depression, I was finally diagnosed in 1995 and I must admit I was so relived to have a name for it. After the bout of depression I managed to get back to work after 3 months until retirement and sometimes I wonder how I kept going. It was a relief for a diagnosis but really didn't change my doctors attitude. I always through it would go away, but unfortunately it hasn't. `I still have a problem with other peoples attitude, even close family, but I now have the attitude that if I don't feel up to doing something I just say no and if people don't like it that's their problem. Just don't push yourself too hard, and accept that you will have ups and downs and when down just remember you will have ups as well.

catcalling profile image
catcalling in reply to izzykirk3

Hello, thankyou for taking the time to comment on my post.

You hit the nail on the head when you said don't push yourself to hard, we all have better days than others and when you are having a good day its so easy to try and get loads done because you are feeling ok.

Trouble is you sure as hell feel it the next day!

I hope retirement is enjoyable for you....x

izzykirk3 profile image
izzykirk3

Thanks catcalling, yes retirement is great as I can do what I want when feeling good and can now say no when I want. Although along with Fibro the ageing thing is slowing me down, but at least I am my own master. Hope you take things easy and get some relief.

Jo946 profile image
Jo946

I don't give a hoot about a diagnosis until they can treat it. It doesn't mean a thing. You are way more patient than anyone I know putting up with Western Medicine crap for eight years. Hats off to you. I got told by a rheumatologisylt I had it first visit and he had no solution for me other than poison that was going to cause weight gain and add to the problem. Do yourself a favour and find an integrative doctor and get a Cytokine panel done. That will tell you what is firing your inflammation. Hopefully you will end up pain free like I am.

You may also like...