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Fibromyalgia Action UK

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How to get a diagnosis or speak to a doctor that understands

fuzzyduck24 profile image
40 Replies

I am new to the group, 30 year old female with every symptom of Fibro. I have never had a diagnosis, I have spent so many years visiting doctors, trying to explain my symptoms and being told it's all just depression. I don't feel depressed, i feel pain. Sometimes it hurts my insides to stand up, standing straight my backs nd chest and middle and whole torso feel like they cannot hold up right, i get so cold in my bones i cannot get warm even though everyone around me is in t shirts. My wrists feel like they are going to break, i feel so weak like i will snap in two, but i am actually a strong girl who also goes to the gym. I feel like a walking contradiction, and I'm terrified of the doctors telling me I'm making it up. I don't know how to start to explain how this is feeling as it sounds so dramatic i don't even think my partner understands the extent of the pain I'm feeling. My colleagues have asked me to kindly stop moaning about being in pain, and my partner is sick of it too. I am so worried the doctor will not understand or think i have self diagnosed myself. Any advice ? Are there doctors who specialise in this that i can see? Thanks for any advice

40 Replies
Themanwithnoname profile image
Themanwithnoname

Keep a diary and hopefully you get to the bottom of it. I would put fibro to the Dr and go from there. I was diagnosed by Rheumatology. Sent packing with a leaflet and the offer of CBT. GL.

fuzzyduck24 profile image
fuzzyduck24 in reply to Themanwithnoname

Thank you! Finally people who understand 😭

thespianglobe profile image
thespianglobe in reply to fuzzyduck24

Sitting here typing this in exactly the same state, GP not interested. I am a good deal older and retired which helps as I can sleep during the day. Unfortunately lacking energy also leaves you unable to pursue basic things. I have given up with doctors as I don't have the strength to fight my way through the system anymore so I have stopped doing most of the things I loved to do. Am I depressed - I suppose I must be but there is a lot of difference between being depressed because you feel so ill all the time and being ill because you are depressed. I have never been properly diagnosed and at the age of 70 I don't think anyone is much interested. My family couldn't care less.

fuzzyduck24 profile image
fuzzyduck24 in reply to thespianglobe

I'm sorry you're going through all this too. I think people just don't understand. Good to know we are not alone on this forum

does-the-NHS-work profile image
does-the-NHS-work

This is tricky to say because I did not believe I was depressed! That is not to say you are, just important to maintain an open mind.

Ask your GP for a mental health assessment, very simple, they will perform a set of questions for anxiety and a set of questions for depression separately, may carry out other tests too. The total score will give you the answer.

All I can say I was in denial, I hid the truth, some knowingly some unknowingly, so it is really important to be honest, - trouble is I did not know I was depressed, the questions will reveal the answers if you are honest with yourself.

Depression and PAIN are closely associated.

This may help tmswiki.org/forum/threads/d...

fuzzyduck24 profile image
fuzzyduck24 in reply to does-the-NHS-work

Thank you! You are right, i do feel depressed. Saying that i don't is a lie. What i mean to say is that i feel so low because i am constantly in pain. And that i am working hard on my mental health and that i think the low feelings are much more due to the physical pain i am in more than anything else. If i have a few hours when i am not in pain , i feel amazing and so happy. Thanks for the support. I feel massive relief in finding this forum xx

Midori profile image
Midori in reply to fuzzyduck24

I told my GP that I was depressed due to the pain ; not in pain because of depression.

Cheers, Midori

does-the-NHS-work profile image
does-the-NHS-work in reply to Midori

Yes, I agree with that too, I used to say to my GP not sure if the condition is making me depressed or the depression is making the pain! you just don't know where to start.

Well for me it was or is the depression and now I have a proper mental health assessment, techniques and treatments with therapy, guess what my pain is reducing in folds.

Midori profile image
Midori in reply to does-the-NHS-work

For me it was the other way around, and I reckon the GP just made an assumption that I was depressed.

I can't blame him; I had been depressed (PTSD), but I was doing well.

I had plenty of pain, yes and it was still when they were dishing out the opioids with abandon, but I could see quite clearly that it didn't quite add up. They had me on CoCodamol and Codydramol at the same time, on repeat prescription! And Sertraline.

I asked to come off the CoCodamol as they weren't really helping, and started weaning myself off the CoDydramol, and asked to be put on Ibuprofen, which works for me. And I got off the Sertraline. I am lucky that I have strong will power.

So, now I'm just on the Ibuprofen, which helps with the pain(Mainly in my back, knees and hips. and more recently in my hands.) At 74, Arthritis is nibbling around the edges.

Cheers,Midori

does-the-NHS-work profile image
does-the-NHS-work in reply to Midori

Midori, You are So refreshing, to read your sheer determination to overcome these hurdles, I know it is not easy to make them changes, especially coming off the opioids, I can only imagine the pressures you had on yourself to achieve the drug change, You are a credit to others on here, fighting to achieve their comfort.

It is a known fact that your body gets used to Codeine and you need to constantly increase the dose to achieve the same level of comfort, yet they still dish them out for this condition. I hope anyone else reading your account can understand the dangers.

Midori profile image
Midori in reply to does-the-NHS-work

Thank you,

Arymretep profile image
Arymretep in reply to Midori

You should never have been given codrydamol and cocodamol together as they both are more or less the same, I’m glad ibuprofen works for you, they help my arthritis pain but sadly I can’t take them because of stomach problems, and they can cause bleeding problems like aspirin.

Midori profile image
Midori in reply to Arymretep

My doctors at the time knew I was a former nurse and wouldn't abuse the tablets.

I am well aware of the dangers and took one for daytime and the other at night.

I must admit to not liking the CoCodamol very much, as it is a mix of Codeine and Paracetamol, which doesn't work for me.

Even the CoDydramol I would not take a full dose of, unless I was in extreme pain, which rarely happened.

I also had to stay in control for my children.

I find Paracetamol does not ease my pains, which are mainly Musculo-skeletal nowadays. which is why I go for the Ibuprofen for choice, but I only take them after food, in order to mitigate the dangers of gut erosion.

Cheers, Midori

Arymretep profile image
Arymretep in reply to Midori

Yes ibuprofen caused stomach ulcers for me even though I took them as directed after food, so i dare not touch them even though they helped the pain.

wiserlady profile image
wiserlady in reply to does-the-NHS-work

Depression and pain are closely related when either is caused by a lack of serotonin, and lack of serotonin has pain and depression and much more as symptoms.

Cat00 profile image
Cat00

I had been going the doctors for years, since childhood, trying to get help/answers to no avail. Eventually I stumbled across an article about fibromyalgia it sounded just like me. So I took a print out of it with me to the GP and I said "I think I have this" and they said "yes, you probably do". It was later confirmed by a rheumatologist but that was years later.

does-the-NHS-work profile image
does-the-NHS-work in reply to Cat00

Do you know, firstly I do agree with you about taking info to your GP as in my case it took years to receive any diagnose.

Yet, that said, I now wish I did not have the fibromyalgia label. - The reason why I feel this is due to the lack of knowledge or support routes the NHS can offer. (no criticism just my experience)

Also, In my opinion fibromyalgia is mental health, reason is, at the very least PAIN is BRAIN - so for fuzzyduck24 I believe the GP here has got the diagnosis 100% - providing they have ruled out any physical symptoms attributing to the PAIN.

As we can all witness on this fibromyalgia forum a vast majority of posts contain, depression, anxiety, pain and a general hopelessness all psychological illness, mental health and to cap it all we are all fed antidepressants - yet me included - I can only suspect a vast majority on this forum have never received a mental health assessment.

Cat00 profile image
Cat00 in reply to does-the-NHS-work

I'd already been in the mental health system for years so that wasn't an issue for me. The thing you have to remember is the majority of patients with anxiety and depression don't have widespread pain and fatigue that comes with fibromyalgia. In my time as a patient in the Tertiary Mental Health services for Complex Cases I was the only one out of 96 patients who had chronic pain, and that included the self harmers.

does-the-NHS-work profile image
does-the-NHS-work in reply to Cat00

I understand. Taking you out of this equation, - many sufferers on this forum have had no mental health assessment - this is where in my opinion the danger lies, especially if the GP is dishing out antidepressants.

Midori profile image
Midori in reply to does-the-NHS-work

I agree.

fuzzyduck24 profile image
fuzzyduck24 in reply to does-the-NHS-work

Thank you so much. I see how the label could not be helpful, but for me, having a diagnosis would justify my symptoms and prove i have something to be believed rather than just ' oh she is making it up ' . Maybe i can show people around me some proper information about this, and not just feel like i am complaining all the time and just 'lazy and depressed ' . It's more about having people around me understand it for me. I really hope the doctor will agree with me when i go to them later. I developed a fear of doctors after the years of not being believed.

does-the-NHS-work profile image
does-the-NHS-work in reply to fuzzyduck24

No. not at all. You are in fact right on the point of success for me, this is where it all went wrong for me as I thought the same as you, total denial, felt ashamed, stigma of depression, all that self diagnosis you sound exactly like I did at the start.

I went for years, yes, years of my life to the GP without any assessment, Its all over my medical records what I have said to the NHS "you are not listening!" I know that because I have a copy of my medical records and read it myself, yet still did they listen NO! It was only as a passing comment fibro is in you head that gave me the clue.

Cynical as it is look at my forum name Does the NHS work for me a resounding NO, it did not, in fact they nearly drove me to suicide,, not a thing I am proud of admitting but it is the truth, when over 10 yrs you are ignored - this is where I was. So for me I say to you DON'T GIVE UP you will get relief.

I than paid privately for psychotherapy, hypnotherapy and EMDR and the evidence was resounding that my mental health was not good. Anger, fear and no acceptance, denial.

I am going to be honest as I will not be on this forum for much longer as my life has now changed profoundly and my pain, stomach IBS, headaches, sleep, fatigue all the normal feelings under the fibro label are improving with what I now know.

Have a listen to this audio book on amazon it is called "healing back pain" it is worth every penny.

fuzzyduck24 profile image
fuzzyduck24 in reply to does-the-NHS-work

Thank you ❤

does-the-NHS-work profile image
does-the-NHS-work in reply to fuzzyduck24

You are so welcome, when and you will find the shift, some call it the paradigm shift the eureka moment, when all this makes sense, - you like me will look back with indifference and think what was that all about. Don't forget to listen to Dr Sarno in that book, for me it was life changing.

fuzzyduck24 profile image
fuzzyduck24 in reply to Cat00

Thank you. This feels same as me. Since puberty i have been feeling symptoms, they are just becoming more apparent now. I got a reputation at school for 'always being off ill'. People around didn't believe me. Doctors didn't either.xx

Cat00 profile image
Cat00 in reply to fuzzyduck24

Yeah I was at boarding school, the teachers thought I was being rebellious or lazy. They kept giving detentions etc, it's very hard not being believed, it made me doubt myself so much I don't think I'll ever shake the guilt for being a crapper human being than everyone else.

fuzzyduck24 profile image
fuzzyduck24 in reply to Cat00

Exactly. I am doubting myself because everyone around me doubts it. I feel like I've lost my mind and it's all made up and the pain is imagined and maybe i really am just doing it for attention and everyone feels like this but they just don't complain about it and get on with it. I don't know how to

fuzzyduck24 profile image
fuzzyduck24 in reply to fuzzyduck24

Thanks for the understanding. FINALLY people who feel the same feelings as me. Massive help xx

Cat00 profile image
Cat00 in reply to fuzzyduck24

I once asked a doctor "how do I know if I'm a hyperchondriac or not?" She said "oh no you're definitely not they come everyday!" Which I did find quite reassuring and the data does support that gp visits have been shown to go down after a fibro diagnosis.

The reason I ended up going to a rheumatologist was bc read a book by a doctor from my local hospital and discovered that pretty much every condition I had could be traced back to fibro. I ended up wailing at a doctor because if they had just bothered to tell me that my IBS, Bladder Pain Syndrome, Migraines, Insomnia, Raynauds etc etc were frequently found in people with a diagnosis of fibromyalgia it would have saved me years of anguish. I couldn't believe so many different things in my body could be malfunctioning at the same, I thought I was crazy and completely on my own. I can't imagine why not one of the masses of doctors I'd seen at any one point couldn't yell me such a thing? Aaagh sorry I'm venting now!

fuzzyduck24 profile image
fuzzyduck24 in reply to Cat00

Yes vent away. It's so frustrating! I am just so so happy i found people who are feeling the same way. YES bladder pain, Cold sensitivity, all these things I haven't even bothered mentioning to docs for fear they will think I'm reeling off endless symptoms. THANK YOU vent away! ! !! ! ! 😭😘😘😘

Cat00 profile image
Cat00 in reply to fuzzyduck24

Thank God for forums eh? I have chronic migraines, took years to be believed and treated. In 20 years I've never met anyone with chronic migraines but I know they are out there now at least. It makes a big difference. That's how I found the fibro forum, we are not alone anymore!

Gaballetto profile image
Gaballetto in reply to Cat00

I had a wonderful GP in Australia ( before I moved to UK) who would unashamedly Google things on the internet while we talked, so he would know what I had read and we could discuss it on 'equal' terms. It helped immensely, so taking a printout with you of what you have read to your appointment with the GP must surely help.

Cat00 profile image
Cat00 in reply to Gaballetto

They didn't seem to mind. Although fibro was barely heard of back then, where as it seems to be relatively common now. I did think they might tell me off for googling but they didn't, it probably helped my mother was there though, always good to have a witness!

fuzzyduck24 profile image
fuzzyduck24

Thanks everyone for your comments, i have an appointment booked tonight so will take fibro to them and explain that i suffer every symptom. I think that's why its been difficult to explain before because there are SO many symptoms all at the same time it has always been difficult to go to a doctor to explain as they tend to want to tackle one problem at a time. I have been told before that if i have multiple symptoms like this i need to book more appointments to tackle each symptom separately. Basically treated as though i am making it up. And that's how i feel daily when i try to explain to anyone how this feels. It is so much and so overwhelming that it sounds as though i make it up, and the list of symptoms how i have been feeling for all this time is overwhelming i forget them all. It has become part of me. I do have anti depressants and i do admit that maybe part of this is depression, but what i meant to say is that the Pain is real and not just 'in my head ' . That we actually feel the pain physically and so strongly. Which i think people around us struggle so much to get their head round. As though it is all ' in our heads ' sorry for ramble. This is overwhelming. I am so happy i found this forum where i can speak openly and people are actually understanding. I feel like crying with relief. So dramatic i know. I am often told i am too dramatic when trying to explain how i feel. I stopped bothering with colleagues. People can really lack empathy . Especially when it is something ' mental ' going on. Thanks sorry ramble over

Appreciate your support ❤

Benanarama profile image
Benanarama in reply to fuzzyduck24

So sorry to hear you are going through this bad time with your health and not getting anywhere with the doctors. Unfortunately I have been the same way for well over a year now (probably longer) and without help or understanding. Pain and fatigue especially have increased so much over time to the point I have recently been forced to give up my work and literally everyone around me my ex boss and doctors included would basically in one way or another say its all in my head and then continue to lecture me that I'm not doing this or that, and that is the reason for this or that. Everyone seems to be an expert yet they are completely clueless to the very real pain and challenges we face everyday. I still actually haven't got a diagnosis and have been tested for various things, had stuff ruled out. After giving up work some family have started to see the affect this illness has on me and have started to be a little more supportive. After many visits to the doctors it wasn't until the latest appointment I had where my mum came in with me to show how concerned she was for my well being that she even brought up fibro (my grandma also suffers with fibro) and for the first time ever my doctor actually acknowledged it as being a real illness and the way things are going he does think its very possible I may have it. Out of all my tests all came back normal except my iron was a tad low so taking iron tablets. See how I feel after I have taken course of tablets but my doctor did say he doesn't believe this to cause the extent of symptoms I have. Its such a horrible process to those who genuinely suffer and wouldn't wish the stress of it all on anyone. Honestly makes you feel insane at times. Sorry for long message but I have nobody to talk to about this. Hopefully you will one day soon get the correct diagnosis and be able to adjust and live a happy life. all the best

Yassytina profile image
YassytinaFMA UK Volunteer

Hello there and welcome, yep doctors that do not recognise Fibro🤣have you looked on the local website at comments from patients about the performances of doctors and any in particular that stand out, even a phone call to reception and ask if any GP would be suitable to see, you , poor you going round in circles as we quite often do for years until we actually get somewhere . Yes agree a diary with symptoms and how long they have been going on for, some docs will refer to rheumatologist, I don’t think other people that do not walk every day in the shoes of a Fibro person will actually understand. We do here , good luck let us know how things progress for you xx

fuzzyduck24 profile image
fuzzyduck24

Thank you everyone for your help, i visited docs and took fibro to them. She sending me for blood tests to rule out other things but she agrees with me that it sounds like fibro and she was actually aware of what it was, increased my anti ds to double dose so let's see what happens

Also going to listen to the audio book that you recommend

does-the-NHS-work

❤thanks everyone feeling much better now knowing there is some support out there

RWilliamson profile image
RWilliamson

There's already loads of great advice but what I found moving doctors helped. I've also found most female GPs to be more understanding, most male GPs leave me in tears! I also forked out £250 to see a private orthopedic doctor which I think made my GP realise I am serious enough to throw money at it. It took me 3 years to get a diagnosis so don't give up, I understand the pressure it's putting on your relationships so hopefully this forum can offer you some further support and guidance xx

wiserlady profile image
wiserlady

Hi Fuzzy - hope you are feeling better today. Maybe this will help. I am 65, know more than most about health, medicine, natural aids etc. Which annoys my doctors. But I found years ago when I got ill that doctors were often missing things, not listening properly, not understanding, mis diagnosing etc, and it was essential to start to spend more time on researching, understanding, and knowing more about all this myself.

First my doctors did not get that I had an underactive thyroid - about 8 years ago. I had all of the symptoms of it. They kept ignoring it and saying oh its just a cold, just a cough etc, as if none of these things were connected and it were normal that this goes on forever. I researched it. Told them I thought it was UAT and they did not like it. I pushed and pushed as they could not suggest anything else, blood tests proved me right. Years later I had a very bad stomach. Awful pain constantly. They once again took no notice. I researched it and told them I thought it was stomach ulcers. One of them suggested I have an ultra sound to see if it is. Yet when I had researched it

the information on a very reputable serious site said you cannot see if a stomach has ulcers through an ultra sound, it has to be the camera down the throat. This doctor did not know this.

I had a lot of ulcers. If I had not pushed and learnt that would never have got sorted.

For years I had constant problems with nose/ears/head. I said it was odd this kept happening over and over,they just shrugged. It is connected to the fibro.

For three years I was told I had asthma, they gave me montekulast to take to help with it.

I took it and within a month or so was very ill with aches and pains and much else I had never had. Fibro. Because of this medication. Obviously I stopped taking the medication straight away. But the fibro is there for keeps and just as strong years later. Now I am far more picky about what I will take and researching it first. Yes it is time consuming, it is depressing and boring, but if I dont do it nobody else will do it. And it is my body and in my interest. Lots of people with chronic illness do not work so at least they have more time to do that.

My so called asthma was acid reflux! Part of the problem too. And acid reflux can go into ears and nose. One of the doctors at my practice would think that every time I am ill or present a new symptom it was to do with my asthma and want to send me to the chest clinic, even when it clearly had nothing to do with chest, asthma or breathing. When I got tingling in my feet and stabbing pains in my legs his answer was - ok we will send you to the chest clinic!

You have to stand up for yourself. A lot of people say ok doctor and off they go, blindly following orders. Running around from pillar to post to suit him and ignoring he is wrong and they are wasting their time. I have to go 20 miles to see such a doctor and find the journey etc very difficult there and back. You lose a whole morning or afternoon to it. If you know it is the wrong place to go say so and refuse to go. The last time it happened I said no this is fibromylaigia, if you insist on sending me somewhere else you send me to a rheumatologist not chest person. They argued with me about it but I insisted and eventually they did - and hey ho. I am told it is fibro.

I found that by taking control and learning and doing things to help myself I felt empowered and more in control rather than just a victim. You cannot keep telling people around you how bad you feel because they have heard it all before, they get bored with it. They want to be with a fun person, a happy person. So I often pretend to feel far better than I do - for their sake. But also for mine, because it can lead to ruined relationships and divorce if your partner hears nothing else but that.

My partner is a lovely man but totally clueless about all of this. IF I tell him stuff it all goes in one ear and out the other and he is not a problem solver. I often feel too ill to go to the shops to get the food shop. He takes this to mean that we have to leave it until I feel better - which could be weeks away. I take it to mean that he has to go alone and I will give him a list of what to do. Life cannot just stand still and stop until I feel better,things still need to be done.

I own and run a very successful business with a lot of staff. That is easy to do because it is making decisions, thinking and knowing and speaking on phone and computer. Not physical. Perhaps because I have dealt with television, radio, newspapers, magazines, clients and staff for years I don't let people push me about and am more resourceful, more a thinker than some. But you can be that too if you put your mind to it. And the benefits are enormous.

People who talk to people with chronic illness always talk to us as if we are total idiots with no brains whatsoever. Giving us stupid unasked for advice. Things that a five year old could figure out are ridiculous bits of advice. I've found that I sometimes have to say to people - please don't give me advice, I can figure that out for myself thank you. Sometimes you need to be assertive. Otherwise all of your character, personality and abilities disappear. And you are far more miserable.

fuzzyduck24 profile image
fuzzyduck24

Thank you. I also suffered with acid reflux for years, it went into my nose , throat and ears and also took my own research to work out what was going on. As it felt as though my throat was closing up and i initially thought it was an allergic reaction. My partner and colleagues are sick of hearing about my pain. I've decided to stay quiet, keep in my head and maybe use this forum to vent, with people who really understand what I'm going through. I'm so grateful that I've found this and sorry to hear your struggles. But it is reassuring knowing that we aren't alone

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