In your opinion, what were the main f... - Fibromyalgia Acti...
In your opinion, what were the main factors that hindered your diagnosis of Fibromyalgia and made it a lengthly process?
Mdaisy316 VotersPlease select all that apply:
My comment regarding other
Every time I'v had a consultation with medical professionals regarding my conditions I've always felt like an inconvenience, made to feel it's all in my head, there's nothing they can do to help, I'll just have to deal with it.
Hmm. That's not uncommon. I'm very lucky with my GP. He can pitch to the patient's abilities. A great skill not taught. I think it helps if you know a bit about your condition and demonstrate you're in charge, not it. I know there are times that's not easy. Doesn't help if GP is not on board. Like the rest of us , despite updates they can get stuck in the rut they learned at med school, they are human after all. My sympathy and gentle hugs
Love the hair
I'm sorry you are made to feel this way, it isn't right. I get it too. I sat with a Dr on Friday and when asked what the problem was I felt I had to start off by saying I wasn't a hypochondriac. He didn't say anything but did discover a rather pressing problem which I hope supported my being there. It's not right that patients are made to feel that way though. Gentle hugs xx (and yes, very cool hair!)
Although it took 3 months from 1st visit to diagnosis we're both confident it's right. Not been referred anywhere but that may come in the future for treatment like physio or rheumy.
The time was going through a series of elimination tests like stopping statins for a month.
Wow Fenbadger! , 3 months is a fairly short space of time I think you'll find compared to others. My diagnosis took 2 years and I know many others experience the similar time frames. A medical professional along the way must have realised early on that this was one possible diagnosis maybe? !
I agree. I was impressed.
I think there are 2 main factors.
I'm a good observer and reporter
He listens to what I say, not what he thinks I should be saying. Doesn't stereotype which is amazing.
looking at other posts not just these comments it's pretty amazing. We even eliminated Vit D.
I who go on about healthy balanced diet nearly had rickets 
We looked at polymyalgia early on. My pain diary showed results that we could eliminate a couple of things at first consultation.
I think he must have it in other patients too. Went straight to trigger points without looking it up. Happy Badger. 
I feel for those who have difficulty, they can do without that on top of their other worries.
Blimey your GP must have been on the ball, it took over 5 years to get my diagnosis!
I'm beginning to realise he's more amazing than I thought. He's a treasure. I'll have to tell him. From talking to other patients he has that excellent skill of pitching his speech to the patient's ability to comprehend. I just wish he wouldn't keep falling off his motorbike
He is an exemplar to the NHS. If more were like him they'd provide a better, more economic service. JRTs for ever
Have you seen my posts on those?
Took 20+ years to get myself diagnosed, and I had to really get stroppy with my GP first.
i was the same midori, all i got told was its probably arthritis every time then it would be sciatica. my problems started 19 yrs ago & i was diagnosed last year after really going on & on.
My GP refused to consider that I may have fibromyalgia and just said that I had lots of things wrong all at the same time. In fact my GP was insistent in saying he would not diagnose me with the condition. I was actually diagnosed by my physiotherapist which was then confirmed by Professor Davies from Guys. I paid for a private consultation because of the long waiting list and he notified my GP in writing. I then had to fight to be referred to Guys with the local health authority. Incredibly stressful and so unnecessary.
Hello AriadneJones,
Sorry to hear you had these issues. Feeling incredibly lucky as my GP Surgery fought PCT and the result was that they were able to send a referral for an appointment with the late Professor Davies which I believe was the turning point in the treatment of my Fibro.
Hope you're well
Emma
I hadn't realised he had passed away, what an amazing man, I'm really sad to hear it. Without his diagnosis and medication, I don't think I would have ever improved. My new GP (I've moved away) wants me to come off Gabapentim but I am digging my heels in and fighting him. I'm much more assertive and want reasons which some GPs don't like. I don't care I'm in charge of my body and will fight for my rights!
I'll just step off my soapbox now and say how glad I am that you had a decent GP. I hope you're well too
Hello Ariadne,
Yes, he sadly he passed away in the summer of last year. Dr Chris Jenner has taken over the FMS Clinic London and at the moment it is for Private Consultations only in London and not including Bristol anymore.
I wonder, has your GP said why he wants you to stop Gabapentin? There is a new policy that is now in place, you may find this post of interest please see below;
healthunlocked.com/fibroact...
Emma
I was going to tick "other" but then found I couldn't make a comment - I didn't appreciate you did that here... 
My "other" is that I was just dismissed, which is why it's taken somewhere in the region of 30 years to be diagnosed. No one wanted to know, to understand or listen & it has only been in the last 5 years that I've been lucky enough to get the most wonderful GP who really does want to help. She's one in a million and I now hope (desperately) she will work until she's about 75 to see me out LOL!! Having experienced some of the very worst I greatly appreciate having one of the very best. <3
Hello Celticmoon,
I have to say I am slightly confused as you say you were going to click 'Other' then comment, why didn't you? As you have commented above!
All polls here always have the option for you to click 'Other (please comment)' and the comments are written here - the same place where you have commented ! Or have I misunderstood what you are trying to say?
I think that we are probably likely to see lots of comments about dismissive GPs and Healthcare Professionals unfortunately. We need to continue to raise much needed awareness, so others do not have to experience what we have. If you are still experiencing problems you can make an appointment with another GP, speak to Patient Advice Liaison Service, write to the Practice Manager to complain and/or change surgeries.
I hope you are able to find another GP who will help you now with treatments for Fibro as soon as possible if you haven't done so already. Don't forget you can email us for leaflets & posters in an Awareness Pack to put up around your community, local hospitals and GP surgery.
Let's spread awareness together!
Emma
Thank you for taking the time to reply Mdaisy. <3 As this was the very first time I've taken part in one of your polls I didn't appreciate that you clicked on "other" then left a comment on the following page... I voted after I had unchecked the "other" box because I was unsure what to do as you can only see the screen where people were commenting after you have voted. Sorry for being dense. I thought I'd just add my comment so that others could see and relate to it & hope that's ok?
Re my GP. I was fortunate enough to get the most wonderful GP when we moved house 5 years ago. She's been of immeasurable help to me & I greatly appreciate her invaluable support. I really could not ask for better, having experienced some of the very worst I am hugely grateful to be one of the lucky ones who now have one of the very best.
I will certainly ask her if she would like one of your Awareness Packs for the surgery. Thank you for the offer.
Hello Celticmoon,
I think I understand now, you were expecting a comment box before pressing 'Vote' button ? This is feedback I could speak to HealthUnlocked about as they are in charge of the technically aspects of the site and FibroAction run it.
We may find others wonder the same and do not realise you comment here afterwards as it is not clear.
Great feedback I'll mention it and I look forward to your email info@fibroaction.org
Best Wishes
Emma
FibroAction Administrator
P.S Glad you have a good GP now !
Hi Emma
Must admit it flummoxed me a bit as well -probably the fog :o) x
My pain started in my hands after a long previous history of chronic migraines. It was me who assumed the 2 were unrelated and that the initial soggestion of arthritis in my hands was correct. It wasn't til 6 months later when the pain migrated elsewhere that my GP suggested fibro; she was very quick with blood tests to rule out other possible conditions and diagnosis was made in 2 weeks with immediate referral to a pain education course. She was fantastic and I was very lucky
regarding other vote ,Doctor having no time in listening and treating one or two symptoms at a time. after years of appointments a locum doctor picked up problem ( fibro) and sent to rhumetologest for the diagnosis
I went to my GP initially with tennis elbow in both arms and other problems and he put forward the suggestion that I had Fibromyalgia, which I had never heard of. It remained in limbo for a few years, I sensed that perhaps he had changed his mind about that or was ambivalent and then I experienced a huge flare up of all my symptoms so I asked for some kind of additional input/help and it was only then did I get referred to a consultant at a local hospital .My initial consultation was done privately because the average waiting time was about three months , didn't feel happy doing it this way but was desperate ! After that I went to the same person but at the NHS clinic and had to wait another four months for an appointment because the first one got cancelled. I had one other appointment to get results and then was discharged from the clinic with a formal diagnosis of Fibromyalgia.
My mother took Me to the gp at least once every six months of my childhood about the severe pain in my leg joints which she, her mother and my younger sister all suffered from to a far lesser degree, the dr gave us many different fob-offs from 'growing pains', to 'attention seeking' I.e. lying, to 'all in my head', but he never once actually examined me, sent me for tests or investigations or referred me to a rheumatologist, this was still going on by the time my mum had died and I was 22 ( that's 20 years since the first time I remember my mother telling him about it, she was 7 months pregnant with my sister at the time), I moved to a different area of my town at that time and had to change dr's, within 6 months I had a diagnosis, but was told the damage was done and could not be repaired, I would only ever get worse, I'm now 36 (just turned) and wheelchair bound, completely unable to do anything for myself except use the iPad, I'll always hate my families old gp (my sister and nephew still go to him) he crippled me by being pig-headed and dismissive of me because I was a child when I first complained of pain, he's ruined my life but by the law I have no right to sue him for negligence or malpractice, I want a baby with my husband but I may not be able to because of the problems caused by my illness, something else he's possibly robbed me of, so I think the reason my diagnosis took the first 24 years of my life was because dr's don't believe children when they claim to be in agonising pain, and dismiss them not only during their childhood with any illness they complain of but also for the rest of their lives even once they are able to state and describe eloquently their problems and symptoms they then get the standard answer of "I'm the dr who went through years of medical school I think I know better than you" even when they obviously don't.
Many thanks for reading my story/rant, I hope you find out what you need from your poll
Sian
:o( xx
I had "growing pains" when I was 7 years old (and for several years after) and couldn't walk for a few days. back at school, I had to stay in at break and dinner times, I also wore thick tights and trousers as it was a severe winter.
when I was 20, I was dxd with RA and "muscular arthritis" - later renamed - Fibromyalgia!
I still have severe pains in my legs when it is cold and wear leggings or thick tights under a long skirt - but now I'm 57!
Yes when I was diagnosed I was told 'muscular rheumatism' and my gp told me not long after that it had been re-labelled to fibromyalgia, I was always in pain it never let up but none of my teachers gave a flying.... And my senior school P.E. teacher was a sadistic bitch who would make me run the mile and the cross-country course as often as possible and have a go when I invariably came in last and was on the verge of collapse ( and I have severe asthma - also undiagnosed by the same gp who said i was just lazy - too so you can guess how much fun this wasn't) so I totally understand what you mean, I always wear trousers and wear thermal leggings underneath all the time except the height of summer, I'll only wear a skirt for very special occasions and even then most of the time the thermals go on underneath...
Thank you for sharing your experience with me, here's to a lesser-painful year!
Sian
Hi Mdaisy, Glad to be speaking to you,your were the one who though I might have been misinformed regarding my diagnoise, I spoke to my doctor who tested my bloods again for polmyalgia and I am now been given Prednisolne 5mg
for 1 week then to go back to see if things have changed, thank you again for your help and support, if you like I can keep in touch with you to let you know how things are going.
Hello Ruby_moon,
Glad to be of help, so you are now being treatment for PMR and not Fibro?
I did wonder what had happened, as it came to my mind the other day! Please do keep in touch and let us know how things are going.
Hope the steroids start helping soon.
Best Wishes
Emma
I was fortunate enough to be in a private healthcare scheme which is how I got a referral to rheumatology. I had been ill for several years, slowly getting worse and it was my best friend who came across an article about fibromyalgia on Horse and Hound's website forum. We both rode, and the girl was describing her struggles to ride based on muscle pain and weakness and chronic fatigue. My friend told me about it and said it was like she was reading something I had written, as she had seen me deteriorate and suddenly be incapable of doing things that were once second nature. I spoke to my GP who said she didn't know about it but if I could find a specialist who treated it she would refer me. I couldn't locate a Fibro specialist, just a CFS one so my GP (actually thinking back it was a locum, so it probably wouldn't have been done otherwise if it were my regular, doubting GP) referred me. The consultant wrote back and said that my symptoms sounded exactly like fibromyalgia and that the first step should be a referral to a rheumatologist, NOT a psychiatrist. From there it went well! But left to my GP, it was a psychiatric issue, and I would have accepted it if my friend hadn't read about Fibro.
I went for many years before being diagnosed, but only because I suggested that it could be fybro. The problem I have know is whats next, I feel completely left on my own as my consultant discharged me into my doctors care and a load of drugs but still the pain and despair. I don't know how to deal with it I'm really struggling,
I was only diagnosed after I suggested it. At first relieved to put a name to it and then a huge void of "what do I do now " ? I have been in denial for years but finally ready to accept it and try to live with it instead of fighting it. Take all the help you can from anywhere you can. I didn't and I regret it so much now.
In 2005 I went for a (double) appointment at my GP surgery to discuss a number of issues that were plaguing me. The old guy there was a retired army doctor who was a locum. He told me to stop worrying and to stop coming in complaining - that there was nothing wrong with me.
In 2012 I mentioned this to my practice nurse she looked the appointment up. Apparently he posted that I was neurotic and the only problem I had was eczema in my scalp. As result I had pestered my GPs over the subsequent years about loads of things and it was only in 2012 that I mentioned the word Co-Morbidity that a new lady doctor looked at everything and said "I think you have Fibromyalgia".
the gp thought it was arthritis as have had a small amount in my neck for years i was getting generalised pain refered me to rhuemy straight away she diagnosed fibro ,chronic pain,hypermobility & cervical spondylosis & arthritis
It took 10 months from the start of the illness to be diagnosed by a rheumatologist
Rheumatolgist I saw just didn't seem interested in what I we saying so got nowhere, I have osterotheritis in my thumbs and spine my doctor at first thought it was arthritis but I asked fir second opinion seen another rheumatologist who listened to what I was saying and exsamed me through . Fibromyalgia and give me some leaflets to read on my condition now I know what I dealing with instead of thinking I was going crazy . Good luck with your poll x
Re my other vote.I am extremely lucky in that my GP has an interest in fibromyalgia and works with consultants at my local hospital.My diagnoses took one week whilst I was having a very nasty flare up that meant I was unable to get up and down the stairs, extreme difficulty in day to day self care. it was my 3rd visit to GPS though within a week and I'd seen a different person the first 2 times who was an arse so I refused to see again and thankfully third time lucky.I think the younger your doctor the better understanding they have. Just wondering what the relevance of seeing a rheumatologist is? There is nothing that I'm aware they can do to help condition and just check your meds are correct then refer back to GP to manage as this is a condition that is managed by GPS (please see map of medicine - I know this through countless conversations with my employer who tried to make out either I was making things up as I hadn't been referred to a rheumatologist or I was being managed incorrectly by GP, which I knew I wasn't as it followed the path on map of medicine and also what was advocated in fibro discussion boards)), you're better off being referred in to a pain management service which is lead by anaesthetics in my local hospital. I do sympathise with others who don't get a quick diagnoses as this condition can be debilitating,I know as my current flare up is in its fourth month, my drugs have been changed unfortunately without any benefit.today I had a lignocaine infusion which I'm hoping helps. Good luck and gentle hugs x
Ah I see where the rheumatologist thing comes in from a lot of your posts.it's a shame that people who are suffering are being made to wait for a hospital referral to have other conditions eliminated and a fibro diagnoses when this can be done by your GP and the necessary medication, advice and physio etc started asap. I really am lucky to have the GP I have who is pro active instead of ignoring the problem or passing on tests they can do thereby delaying the correct treatment and extending patients suffering.
One issue was me. Pride interfered with me wanting to accept this. It also took me awhile to put together my own array of symptoms. Then getting my GPs to say it out loud - like it was a dirty word - was not possible. After 5 months, I finally had a pain specialist see me and he diagnosed it. Maybe a rheumatologist referral next. We'll see.
Since googling the zips of noise and tension I get inside my head and sometimes down my neck and arms, I have added that as a probable side effect to fibro, among other things. That google search was what brought me to this forum. Thank you for that.
Both myself and doc thought it was athritis migrating, had it since childhood. Saw rheumatologist a couple of times ovet period of 4 years, he was very nice agreedthere was a problem and it caused a lot of pain, but could not diagnose despite tests and xrays. Third visit i fell asleep on couch in his roomwhen he left to answer phone, ( in my defence he left me lying down and was gone for a whole 5 minutes !) when he came back he woke me up,did 18 point test and told me it was fibromyalgia! I had never heard of it and if i hadn't fallen asleep on him i still might not know!
to much "pre judged assumption" Lack of knowledge/understanding, and having a condition that is within that they cannot physically see "Oh you look OK! ,those are the basic HURDLES!!!!!!!
I have gone for other, as I was actually diagnosed fairly quickly but, as a matter of course, I had to wait for a private consultant and chiropractor to contact each other and agree together, and then tell my GP.
My diagnosis took only 6 weeks after I first approached my GP, so it was really good to be honest. I received my first prescription of medication a week later.
20yrs of a combination of all the above, but with my current GP it took the last 6 yrs and eventually together we ploughed and reaped through the system for diagnosis
I am a complex case!!! so I'm told frequently!!
My 'other' - I was told by an eminent Rheumatologist that I was too young and it was not worth spending the money on complicated tests when it was clearly all in my head. That charming comment (I was 17) led to a 3 year complaint epic between the hospital and me, before I finally got an apology (Hell hath no fury like a Lucyhobbit scorned!). My GP referred me to another hospital and 2 visits in I was diagnosed.
How I agree with you all I too once sat and said I am not a hypochondriac, don't know if it helped or not or just confirmed the doctors assessment. I wished someone somewhere would tell the medical profession we are not making it up, it's very real day in and day out.
I was being treated for hypothyroidism at the time but was so fatigued and in pain. Gp diagnosed depression but luckily I saw another gp who recognised the symptoms and referred me to a rheumatologist.
Because I was receiving both chemo and radiotherapy, my health practitioners put my symptoms down to side-effects from the drugs.
My GP had said 'even if it is fibromyalgia, there is nothing that can be done about it so just keep taking the tablets'. She wouldn't include it on my ESA form. I had to take my support worker with me and ask her again if she thought it was fibro. She then said that she was happy to give that as a diagnosis. However, that GP was thereafter very off-hand and rude/dismissive comments at further appointments. Now I only every see her for gynae issues and see the young man GP at the same practice. He doesn't seem to be so threatened by a patient who is well informed and will stand up for herself.
I had other diagnosed medical conditions that had similar symptoms to Fibro. It was a while before both myself and my GP realised that I needed to see a consultant to have Fibro diagnosed, too!!
In my case, my GP believed it to be a 'somatoform disorder' ie it's all in my head!! He then believed my symptoms to be a 'psychiatric disorder' and referred me to a psychiatrist. The psychiatrist diagnosed me as being a hypochondriac. I never went back.
So, the bottom line was that my symptoms were not listened to/heard by my GP and simply ignored. He even found it amusing that one person could have so many symptoms.
I was later diagnosed with FM when at Guy's and St Thomas' Oral clinic as I had a burning mouth and the inside of my mouth was full of ulcers. After a mouth biopsy, they also diagnosed Oral Lichen Planus.
I was then diagnosed with thyroid hormone resistance (THR) at a cellular level and since taking very high doses of the active thyroid hormone liothyronine (T3), I am no longer suffering with FM. If I don't take my T3, my FM symptoms and pain come back with a vengeance.
The late Dr John Lowe was my saviour... thyroidscience.com/cases/lo...
You will find many FM patients have undiagnosed thyroid disease because the thyroid tests for diagnosing thyroid disease are seriously flawed. Dana Tentrini explains more here hypothyroidmom.com/thyroid-...
Silky x
Hello SilkyJ,
I totally agree with you that the Thyroid testing is inaccurate at the moment and should be tested more thoroughly. However I must say that you may have had a misdiagnosis of Fibromyalgia or you may very well have Fibro and the treatment of the stress from a long term condition of Hypothyroidism which was affecting the Fibro has reduced your symptoms.
The fact that you are now on treatment for your diagnosed Thyroid problem and it is helping your symptoms suggests to me that the similar symptoms that occur between Hypothyroidism & Fibro are often confused during diagnosis possibly. It is great that you have possibly had treatment for a previously undiagnosed condition which is helping your symptoms of THR but I think we have to be open to the fact you may not have had Fibro at all.
I know of people who have had all Thyroid testing after initial bloods showed no hypothyroidism and then it was found from the further testing. They are on treatment but it hasn't helped their Fibro symptoms one bit, so I still believe there is much research to be done.
In my opinion, if we had further testing of Thyroid problems that is more comprehensive this would eliminate the Thyroid conditions from the patients with Fibro. I think a petition like the one in Scotland and lobbying MP's about this should be happening if not already in process.
Here is a comment from our FibroAction Founder about Hypothyroidism & Fibro on a previous post;
Thyroid issues should be ruled out (or isolated) before a diagnosis of Fibro is made. Does this always happen? No, so some people are mis-diagnosed. Does that mean that Fibro is hypothyroidism? No.
Having said that, having ANY chronic condition seems to increase your risk of having Fibro. This has been especially studied with the rheumatological conditions, such as RA or Lupus, but it also discussed by experts in relation to many conditions, from hypermobility to endometriosis.
Fibro is the end result of what can be a long process in some people. The over-stimulation of the Autonomic Nervous System - that leads to poor response from that system, central sensitisation, disturbed sleep, low levels of available dopamine and from there to the many symptoms of Fibro - can result from any extreme or long-term stimulation of this system (anything that triggers your body's fight-or-flight-type mechanisms). In some people this is linked to a long period of emotional stress, such as an abusive relationship, in others it is linked to compression of the cervical spinal cord, in others it is linked to trauma and in others to a pre-existing condition (even if the Fibro diagnosis came first). If you have a chronic condition, especially one that is uncontrolled, your body is under stress even if you are not aware of it.
I just think we need to be careful not to confuse the two conditions as, as yet there is no firm evidence to prove Dr Lowe's Hypothesis (as the studies needs to be peer reviewed before accepted as a research and needs to be many studies to collectively prove the same hypothesis)
At the moment as per the British Thyroid Foundation there is not sufficient evidence to prove this hypothesis so until this time it remains a Hypothesis - Definition: a supposition or proposed explanation made on the basis of limited evidence as a starting point for further investigation.
I look forward to further research and campaigning to increase the use of further UK Thyroid testing despite initial levels showing no Thyroid issues found.
Best Wishes
Emma
FibroAction Administrator
Hi Emma
Thank you for responding. I was not misdiagnosed and have a genuine case of Fibromyalgia caused by Thyroid Hormone Resistance (THR) in the body and not in the thyroid gland. Thyroid disease is often confused with being all in the thyroid gland but THR goes beyond that.
For example, people can have normal functioning thyroid glands but they are unable to convert the inactive thyroid prohormone Thyroxine (T4) into the active thyroid hormone Triiodothyronine (T3) in the tissues of the body. Another cause is impaired thyroid receptors in the body, so even if one is converting T4 to T3, the T3 is blocked by impaired receptors and so cannot enter the tissues where it does it's work. Without T3 we die!
"I know of people who have had all Thyroid testing after initial bloods showed no hypothyroidism and then it was found from the further testing. They are on treatment but it hasn't helped their Fibro symptoms one bit, so I still believe there is much research to be done."
Your above comment is correct. The reason is because it there is no test available to detect thyroid hormone resistance in the body and many have 'subclinical' hypothyroidism which doctors will not treat because the guidelines will not permit it. This is gross malpractice but they are bound by guidelines imposed on them by the British Thyroid Association, British Thyroid Foundation, Royal College of Physicians and the Society of Endocrinologists. Those who have been diagnosed are often put on the wrong thyroid hormone, or are on the wrong dose. In the UK there is only ONE thyroid treatment for hypothyroidism and that is Levothyroxine (T4). This too needs to be urgently rectified as thyroxine is NOT a thyroid hormone - it is a prohormone only and many cannot convert it to the active thyroid hormone triiodothyronine (T3).
To get rid of or rather 'manage' Fibromyalgia symptoms, one needs to take the active thyroid hormone Liothyronine (T3) and at doses which are much larger than would normally be prescribed on the NHS. Some people do well on T3 monotherapy and others on Natural Desiccated Thyroid (NDT) which is ground up dried porcine thyroid.
Although T3 is on the British National Formulary (BNF), it is rarely prescribed on the NHS and generally not more than 60 mcg p/d. NDT is not on the BNF and needs a special prescription. When taking any form of T3, one's Thyroid Stimulating Hormone (TSH) will automatically be suppressed as it is the active ingredient and not the inactive prohormone thyroxine so the pituitary doesn't need to send further signals to the thyroid gland to produce more thyroxine.
And therein lies the problem as patients do not get enough T3 to get relief from their FM symptoms. If one's TSH is suppressed, doctors will reduce the dose of NDT or T3 to get their TSH within the reference range, so patients will continue to believe they do not have Thyroid Hormone Resistance (which is not acknowledged on the NHS despite the mountains of evidence). Fibromyalgia symptoms need supraphysiological doses of T3 for any relief of symptoms to take effect. Few doctors will prescribe more than 60 mcg T3 which is nothing for many patients - it literally doesn't touch sides and many do not feel any benefit from such a small dose of T3.
I am on 200 mcg T3 monotherapy per day. If I were to reduce it my FM symptoms come back and I am in terrible pain and bedridden. I had to self medicated as there was no doctor who would prescribe this for me. Now after 7 years of fighting the establishment, I have finally received my medication on the NHS although my endocrinologist is afraid of being reported by his colleagues to the General Medical Council, and so I am forced to stop all T3 for several weeks BEFORE any blood test for my TSH to go back in range. The fact that my free T3 lab test shows well below range is ignored by his colleagues who are all members of the British Thyroid Association (BTA) whom are affiliated to the British Thyroid Foundation (BTF) - both charities - and in collusion with the Royal College of Physicians and Society of Endocrinologists et al.
"Fibro is the end result of what can be a long process in some people. The over-stimulation of the Autonomic Nervous System - that leads to poor response from that system, central sensitisation, disturbed sleep, low levels of available dopamine and from there to the many symptoms of Fibro - can result from any extreme or long-term stimulation of this system (anything that triggers your body's fight-or-flight-type mechanisms). In some people this is linked to a long period of emotional stress, such as an abusive relationship, in others it is linked to compression of the cervical spinal cord, in others it is linked to trauma and in others to a pre-existing condition (even if the Fibro diagnosis came first). If you have a chronic condition, especially one that is uncontrolled, your body is under stress even if you are not aware of it."
Your are also describing (above) the cause of Thyroid Disease,.Dysfunction of the Adrenal Glands and Myalgic Encephalitis, amongst others.
"At the moment as per the British Thyroid Foundation there is not sufficient evidence to prove this hypothesis so until this time it remains a Hypothesis - Definition: a supposition or proposed explanation made on the basis of limited evidence as a starting point for further investigation."
It is well known amongst the thyroid community (and proven) that the BTF does not support patients but has instead close vested interests in Big Pharma.
You can read about this incestous relationship here: tpauk.com/forum/content.php...
Also here is the link to the thyroid petition lodged with the Scottish Parliament. Again, if you take the time to read through all the transcripts and submissions, you will once again see how many professionals disagree with the British Thyroid Foundation et al and the overwhelming consensus (even by MPs) that these charities/bodies are keeping people sick to line their pockets.
scottish.parliament.uk/Gett...
You will also see that Fibromyalgia is one of the symptoms of thyroid disease in the body and is not an isolated illness. But will continue to remain one as long as the endocrine profession continues to adhere rigidly to seriously flawed guidelines and thyroid function tests.
"I look forward to further research and campaigning to increase the use of further UK Thyroid testing despite initial levels showing no Thyroid issues found.
Thank you so much Emma. I believe once this health scourge has been overcome and the proper tests and treatments are in place, there will be many on this forum who will regain their health. That is our goal.
Best wishes
Silky x
Hello SilkyJ,
I have read your reply and I would like to say I understand about the conversion in the liver and as I say I welcome any campaigns to make Thyroid testing more comprehensive in the UK . I am sorry but I am not going to be drawn into discussing any politics that is mentioned by yourself between Thyroid charities.
My point still stands until there is further research Dr Lowe's research is based on a Hypothesis which is yet to be conclusively scientifically proven by subsequent studies.
So my view differs from your opinion below;
You will also see that Fibromyalgia is one of the symptoms of thyroid disease in the body and is not an isolated illness
Your statement above that Fibromyalgia is a symptom of Hypothyroidism I completely because you cannot say this based on one study. The 100 participants in the study were said to have Fibromyalgia based on the ACR criteria which has been changed in 2010 due to possible problems associated with it's use in practice and issues surrounding misdiagnosis.
ISSUES WITH THE 1990 CRITERIA
The following issues with the ACR 1990 classification definition have been identified :
The tender point count is rarely performed in primary care where most Fibromyalgia diagnoses occur, and when performed, is often performed incorrectly.
fibroaction.org/Pages/New-D...
I'm afraid you cannot make this statement without significant evidence to prove this, until this time this is your belief and not based on fact.
As our founder Lindsey Middlemiss stated'
Thyroid issues should be ruled out (or isolated) before a diagnosis of Fibro is made. Does this always happen? No, so some people are mis-diagnosed. Does that mean that Fibro is hypothyroidism? No
Fibromyalgia is a complex illness with many key findings. Here is some key findings of Fibro;
fibroaction.org/Pages/What-...
Fibromyalgia is NOT merely symptoms of a Thyroid problem.
Most researchers agree that Fibro is a central processing disorder with changes in the neuroendocrine/neurotransmitter systems (the systems that transmit messages around the body) and there is an increasing body of evidence to show that Fibro is a Central Nervous System related disorder. Fibro is sometimes called a central sensitisation syndrome. Abnormal processing by the central nervous system causes the pain amplification that people with Fibro experience. The changes in the neuroendocrine/neurotransmitter systems also explain many of the other Fibro symptoms (Lindsey Middlemiss 2009)
fibroaction.org/Pages/What-...
So, I think it is best we agree to disagree.
Best Wishes
Emma
FibroAction Administrator
I'm now nearly 70 and for as far back as I can remember I have always felt not right. I don't bother the doctor often as I was always told that I was just 'rheumaticky', and a depressive. I have had tests for all sorts of things but they always come back negative, so I've always felt a fraud, and kept the way that I felt to myself. I've also had several bad bouts of depression. I was a business woman and worked for 52 years in management and negotiating roles. Eighteen years ago I started up my own successful accountancy recruitment agency, so that when I felt too achey and tired I could work at a pace which was better for me, and nobody could set me targets, or want more than I could give. I retired a couple of years ago when I just didn't feel I could make the effort any longer.
Fourteen months ago my GP retired and I now have a new doctor who read all through my history carefully, asked lots of questions and said I have fibromyalgia syndrome. He has referred me to a rheumatologist (5 months and still waiting!), and in the meantime has taken me off Ibrofen tablets (which I had been on for years) and prescribed Ibrofen Gel, which he says is less dangerous. He has also tried me on Amitryptaline but then changed it to Gabapentin, and Diazepam for back up for really bad times. I also take Citalopram for depression. I don't feel any better yet, but have faith in him, and thank him for believing in me and giving a name to the way I feel.
Hello RobertaWorthing,
Thank You for your comment
If it helps with your treatment for Fibro please look at this post from the FAQ section which may help;
healthunlocked.com/fibroact...
Thank goodness you had a younger GP take over your case and this is encouraging to hear that the new wave of Doctors are been informed about Fibromyalgia
Let's hope others do not have to go through what we have
Emma
FibroAction Administrator
Because I have several psychiatric diagnosis' the GP said that the increase in pain was due to my psychiatric issues and my psychiatrist should deal with it, I saw the psychiatrist and he, said it was definitely physical, and it was up to the GP to solve the problem. So for years they would go back and forth arguing wether it was physical or psychiatric and who should sort it out.
Eventually I saw a different GP, and another one, and another, basically went through every doctor in the surgery, this is after going through the doctors in two other surgeries, I then got referred to a physio, but that was not good enough for me, so I still fought, saw a new doctor and got referred to a rheumatologist. Luckily for me I live not far from the national rheumatology hospital.
Saw a consultant there and started crying in the consultation, he booked me in for a whole host of scans and tests. The next appointment he said everything came back fine, I started crying and he saw my fresh self harm cuts while examining me and the he saw how upset, frustrated and well fed up I was. He then asked if I would mind coming in for a few days to get to the bottom of this once and for all.
A month or so later I was on the ward and within the first day I had a diagnosis, a treatment plan, and medication choices. But when I get out the GP refused the medication they suggested, and the physiotherapy did not go well and the guy, not understanding mental health, discharged me.
So here I am a diagnosis but no help, no support, nothing. I have a perching stool and a bath board, oh, and a crutch to help me at home and out and about, that I got from the hospital referrals, but, yeah, back to square one nearly, and very much p***ed off about it.
I didn't select other but after reading some comments thought i perhaps should have. I was diagnosed with pernicious anemia over 8 years ago and always felt my injections regime was not working properly due to fatigue pain and pins and needles in hands and feet. Twice i was sent to neurology for this and both times have been told not carpal tunnel. After repeatedly complaining to Dr about joint and muscle pain as well as constant tiredness she finally referred me to rheumy about 2 yrs ago. The morning of my appt i was in the middle of a painful flare up with ankles, knees and lower backaffected as well as that horrible dragging pain from shoulder to breast. I was literally in tears with it all. He gave me a leaflet and told me to read it and he would see me about 20 minutes later. Of course the leaflet was about Fybromyalgia. I had not previously heard about it but everything in that leaflet i was able to relate to. I was so relieved not to be sent away being told can't find anything wrong. This was after tests for stroke, including MRI, lumber puncture for Ms, gastric stuff with cameras both down and up and every time being told couldn't find anything other than MRI showing some infarction that they could not explain. Currently managing with amytriptiline and naproxen along with cocodamol depending on severity. So, i guess diagnosis took some 6 yrs. A lot less than some others
Not being listened to, being told that it's just anxiety or stress, that the symptoms are in my head and I'm creating them through being anxious.
The wait wasn't as long as some people's though - in the end I was just frank about the symptoms.
But I'm not having much luck now though, I've not been able to get additional support at uni not through lack of trying, will just have to keep ploughing on. I don't know how long I am going to have to struggle like this for though.
The only way I've been able to survive the workload is handing in assignments that I'm not satisfied with and only getting an ok mark rather than reaching my potential. But hey ho.
Congratulations for carrying on with your education, I know how hard that is. I joined the OU and everything got too hard to deal with, especially trying to read and write with the limited hand movements and constant pain and fatigue, nevermind ten voices I hear, so I had no choice to quit and every day this upsets me and makes me mad.
It saddens me that your university is not offering more support, especially as it is very hard doing assignments while under the strains of fibromyalgia. Have you talked to your tutors/professors? Even providing paper print outs of what fibromyalgia is and what symptoms it causes might help them understand better. I had to explain it all myself to get some support from the OU, can get tiring, but if it means that you get help then it is worth it.
Keep on going, and remember that the ok is better then not been there at all. Good luck.
Thanks RainbowElf
I can begin to emphasis with how frustrated and outraged you must feel at having to stop your course. Fibro is cruel not just because of symptoms alone, but the fact that, it spoils the outcome's of people with real potential, that could perhaps be worked with and managed, if only people received better support, which could then alleviate the stress of feeling alone and thus break the cycle. But it just doesn't seem to happen does it? There's just not enough understanding. When I was 17 people Fibro hadn't really materialised for me in the way it had materialised for some people, I had it (got diagnosed when I was 16, struggled getting people to listen to me 9months before that) - but after the initial diagnosed and treatment managed it quite well, so I don't think I needed to come to terms with for a while and wasn't aware of the affect it might have on me in later life. I was shocked at how badly it got to people when I joined recently before turning 18 - and then I had lots of stresses in a sort period of time, causing the symptoms to flare up irretrievably it seems, and no one understood why and seemed to blame me. Not unsurprisingly it had an irretrievable affect on my grades and my subsequent A level results, I had originally been predicted top grades and got an offer from one of the top uni's for Psychology. Instead I got ok grades (I did badly in my second year of A level but the first year made up for it), and only got into my Insurance choice. My A level grades have stayed with me, and will always stay with me, even if I am successful in the future. They have stayed with me because I think if people had been more understanding and given me more support at school I would have done better. It's a real shame.
I'm happy with the uni I'm at now anyway - luckily it's a good one; and you're right, doing ok is better than not being able to qualify at all - I also don't think my firm choice would have been so caring - I'm luckier than some in the sense that I do have some support, people I meet with and talk to during the week and I've started building up more 'faith in the system' - but as my work is still suffering a bit I know that it can't be enough and it's been an ongoing battle trying to obtain disabled student allowance, to make it fair. Even though it looks to an outside like I'm passing all of my assessments in uni, I feel as though I am being let down on a personal basis because the standard doesn't match up to what it was. Psychology is competitive course and it's something I've been serious about pursuing since I was 17, there's no other profession, career path I really want to go down and don't think I'm capable of going down; so I don't really want anything less than a First Class degree; everyone else expects the same from me because they don't understand the impact Fibro has on me, they've noticed (as it's impossible not to), that I am being negative and depressing but I feel they put a lot of it down to me or other things. And looking realistically at the situation at the moment, I can see that getting that level of degree not going to happen unless something changes. But I've been in a situation where I've needed extra help before and nothing has changed (it's not in my nature to stamp my feet to get what I want) I'll be able to accept merely passing for now because the first year doesn't count to the degree grade, so I'll keep ploughing on till then, I suppose...and then make a decision at the end of the year about the best way forward. I just want to do the best I possible can.
If I can get myself feeling more well, or at least better supported, then I really think I'll be in a position to help other people with Fibro because it pains me to see people suffering so much - I find myself continuously appalled and bewildered that more isn't been done to improve the quality of lives, and - in cases similar to ours - equal, fair opportunities for people with Fibro. I wish I could help more already.
But in between all of this work at uni and battling against my health it's almost impossible to find the time. I also feel guilty for complaining so much on here and not being able to show my gratitude to others.
Thanks so much for replying. I've been feeling pretty lonely recently.
Is there nothing you could do in terms of explaining to the OU people and being able to start up again - with more support? It sounds like something you're incredibly passionate about. It's not fair that you should miss out because of your disability. There's equal right's legislations about this sort of thing.
Take care and kindest regards,
wanderingwallflower xx
It sounds like you have a good support network around you, and you have a good strong will to strive to do what you want. I did psychology at college for a bit, but my mental health crashed and got really bad and I could not manage been there, so I know that it is an incredibly hard and draining course.
If your first year does not count then you can use that year to do research and speak to fibromyalgia sufferers about the best ways to get people at the university to listen. Maybe even getting your doctor/specialist to ring or write a letter for you, sometimes it comes out better coming from them then you.
Stamping your feet and demanding what you want, although not your nature, is unfortunately the best way to get them to listen. It is one of the problems with having an invisible illness, and that is one of the things that makes me so frustrated.
I know that you will manage to get through your course, but I think if you don't seek out any support you will burn out, and as you know stress causes flare ups and then it becomes a vicious circle of pain and stress, and that is difficult to get out of sometimes.
I guess when you finish your first year, and you have a break from uni, you can spend that time gathering evidence, like doctors letters and print outs from various places and show that to student support, or whoever you think will listen and be able to help you. If one person will not help then ask to their manager, and you keep going up until you get an answer. I had to do this to get the right support in my mental health endeavours, eventually speaking to the manager at the building and the area manager. It is tiring, and you may feel awkward, but remember that it will be worse going through another difficult year without any support.
I can't start up the OU again because I failed too many times, and too many courses because the assignments would not get done because I was so tired, and my hands would not work properly. So effectively I am banned now.
I did explain my situation to them, and the only support they gave me was ring binding the books so they were not so heavy for me, and so I could open them flat.
Once I was admitted to a psych ward and missed an assignment but trying to explain to them was like talking to a brick wall, they either gave me general information or didn't answer me at all.
I will never get to have the career I want while having this stinking fibromyalgia, and I think the loss of that going along with the fact I failed at university makes me really upset and mad. I had so many dreams and people who bullied me took those dreams away by making psychologically unwell and maybe caused my fibromyalgia. I have to come to terms with that before dealing with the loss of my career dreams, and even the hobbies I loved that I can do no more.
No worries about the reply, sorry it is so long. I too have been feeling lonely.
Take care and kind regards x
Hi don't worry about the reply being too long It sounds like I'm beginning to go through what you've already been through, and I'm hoping things can improve, health wise, to do everything in my power, to make a difference to people who have been affected, by more than just the symptoms, of Fibro. I'm appalled, that they have banned you from being able to part take in your course, and shocked and actually, angry for you. Things never used to be like that - Fibro or not - people have second chances, but now - according to my head of sixthform you can only retake once, meaning if you can be the cream of the crop but if you've had bad luck and stuffed up the second time, that's it. It's just not right, if something failed their driving test again and again they'd be allowed to keep passing till they got it right. Why can't that be the case with exams anymore?
With Fibro, mental health issues and people's lack of sensitivity about that, it's even worse and sounds like discrimination to me. I don't know enough about laws etc but it sounds like something that could be taken to court, although maybe you already have and they again treated you unfairly. Plus, I know if you're ill and not getting extra support from your loved ones such an idea can seem daunting and lacking in worth when you consider the amount of effort you put in already. I know what you mean about you feeling like you've had your dreams spoilt by other people because I feel the same and occasionally as they had won. When I had a horrible time at school I was told by everyone around life would get better after it etc, and that I would be the one laughing and they wouldn't be (the bullies)...it's...lies, because for some people it doesn't improve, some it does, and good for them, but something things are so bad at the the time they stay with a person and can be result in seemingly irretrievable consequences. I put down the Fibro to the stress I suffered at secondary school. In fact it really started to develop just as I was leaving compulsory education (15) - so things went wrong straight after too.
I'm sorry you've been feeling so lonely - there's no feeling worse. I had a revelation the other day that perhaps on the reasons I get so down at uni is because (other than brief meeting and departing hug from my friend who accompanies me to lectures) I'm very rarely touched when I'm there by another person, which is sometimes for weeks at a time, I'm on chatting terms with my flatmates which is great, but that's as far as it goes which I think is the case for most anyway. I lay on the bed next to my mum last night while she had her arm round me and it was like I was starting to heal - my headache disappeared!
Physical contact is so important and the problem with Fibro is, it's already an isolating condition in itself so perhaps we don't get to see people as often anyway - communication on here is great but real contact is something I think people like us frequently miss, and the internet isn't able to compensate for that. Face to face communication is mandatory.
We're also sensitive to touch anyway,so perhaps it's something we don't get to experience often for that reason too. It's one the basic needs and I think lack of it can cause a person to feel worse and this contributes further to the cycle of Fibro. At least I'm recognising it. If and when I'm able, I'll do everything in my power to put simple things in place like this that I reckon can go really some way to minimising the symptoms...but I seem to have gone off on another tangent.
I guess what I'm saying is, I know how horrible it is. I don't know about your living arrangements at the moment, but there's anyone who can come and see just to be there please get in touch. Sometimes that's all we need, or one the most prominent needs that could be more easily resolved.
I'm here to be messaged if you ever need a friend. I really hope things get better for you. Someone said to me you have to visualise your anger and you have to imagine yourself transmitting it back to the person who gave it to you. But I know this may be easier said than done.
I've been feeling particularly lonely recently because I feel as though I have alienated myself from some people on this site. Sometimes, I can't communicate how bad I'm feeling or the extent of it or why something is bothering me. And this makes me frustrated and I think it shows. 
I think I should have tried harder both to restrain myself, show gratitude, and keep tactful. The ones who have known me longer seem better at putting up with it, but I do wonder if other people now dislike me as a result.
Sorry for the length, tangents are my habit. Don't worry about replying to this unless you really want to, I understand. if we keep replying to a reply it will go on forever. But I am here if you want to talk. I suppose Funkyfairy is a relatively memorable username. I won't forget you RainbowElf.
Thankyou, I will
wanderingwallflower xx
hi Fay, how did your weekend go and is your phone fixed?
Why should anyone dislike you for writing on here?
don't feel you have to be on here all the time. pop in when you want to, stay away when you need to. take some "me time" for you, but know that we are here for you and everyone who wants to post; question; share; anger/fear/worry/smile
regards,
sandra.
Hi Sandra thankyou so much for taking the time reassure me. It isn't anyone particularly, just my own paranoia - sometimes I look back at what I've written and think, Oh my gosh, what have I done??
My phone eventually fixed itself although I went to see my academic advisor first, she took the SIM out while it was switched on and that did it. So that was ok. But I had a horrible day on Wednesday because the doctors appt didn't go as planned, and then I collapsed onto the chair at the end of my bed and stained it with blood (I was on my period), I got really panicky again about damaging uni equipment and the potential embarrassment about my period being the cause, and phoned my mum in tears and she came to the rescue. For all the things she's said that's annoying, what she does it heroic. (We managed to get the stain out, then she stayed and chatted, and brought me some back up too ). Because of all the stress I now somehow have to go two essays in two/three days and I don't see how I'm going to get it done. I haven't done any this weekend because I've had family commitments and there isn't a quiet space to work here at the moment - granddad is in my room and I'm in the spare room that doesn't even have a desk. I choose to go home this weekend because of him, as he was looking forward to seeing me and he's' getting on now, and I think it was the right choice. My advisor said I could attach a memo and email to the module leader, for an extension, it's not something I like using but I think I will have to. It's easier for anyone, who doesn't know what it's like to live with these symptoms to just say that I should have forced myself to start the assignments earlier but I know from experience that pushing myself too hard just makes it feel worse - it's not like I haven't tried to do this. I suppose I'd better book another appt and try harder to get myself prepared this time, I'm thinking to print of the leaflet about Fibro, the spoon theory, and disability legislation. Hopefully then I'll be able to get the extra support I need.
I have a really good friend at uni, and she knows vaguely about my Fibro, so I can be a bit more open with her now which is nice and have been able to explain a few things. I've told her almost everything. Me and my counsellor have been working strategies to try and manage stress and improve things, we're going to have follow ups in March as I've done all my sessions so far.
I'm hoping next time I post, it will be nice and positive.
Big (((hugs)))
wanderingwallflower xx
nite fay
Also I've sorted my living arrangements for next year - I've been put on the priority list for the lovely post grad centre so hopefully it will be quieter and more comfortable. My friend will be living close by so we'll be able to visit one another easily.
xxxx
that's great news!
Docs not giving you more than 5 minutes per appointment, then wasting your 5 minutes asking you to explian everything from the beginning as they do not read your notes.
docs not valuing hte opinion of patients, or organisations such as Fibroaction or thyroid UK
lack of consistency of treatment ( i.e. you cannot see the same doctor, and they contradict the last doctor you saw and start you on a different treatment plan wich takes another couple of months before they admit it is not working)
lack of funding for Fibro
I asked my GP many times if I had Fibro but he kept telling me that it was a diagnosis of elimination. It was only after I was diagnosed with TMJ by an Oral/Max consultant, who asked if I'd been diagnosed with Fibro, did my GP set the ball rolling.
I still haven't really had a firm diagnosis if the only people who can do that are rheumatologists. Is that the case? I'm not clear about that. I was referred to the rheumatologist with suspected arthritis, but he just said it's not arthritis and then asked me what my 'agenda' was. He was shockingly rude and totally unhelpful. Eventually, 8 months later, the GPs came up with the fibro diagnosis on their own. However, I don't know if it's just my GP practice but I didn't manage to get great continuity between doctors, i.e. I saw at least 9 different GPs over a six month period, just because of availability in my very busy practice. That doesn't seem very good to me. Also, some of them, particularly the men, unhelpfully put my physical pain down to histrionics and / depression. They just noted how 'upset' I was in appointments. I had a hard time getting across to them that I was upset because I was exhausted and in, more or less constant pain, not because I was depressed. I felt I wasn't being believed or taken seriously. It seems to me that, as a patient, you must really fight and push to get a diagnosis of fibromyalgia (and maybe I haven't pushed hard enough yet because I have not been re-referred to the rheumatologist or offered pain clinic or any such help). I only got on the meds I now take (amitriptaline, gabapentin) by finding out from the internet what is best for fibro and asking the GP (both in writing and in person) to prescribe it. It can't be good if the only way to get a diagnosis is to be totally tenacious. Having to badger doctors to get a diagnosis is incredibly stressful and just worsens the illness.
My story is a little like yours Lima6MCT.
I have several auto-immune problems, including lupus and hypothyroid. Last year I thought I was having a particularly bad flare up that just would not die down. In September I was diagnosed with TMJ after turning up at A&E with a suspected dislocated jaw, although they forgot to tell me at the time what it was!
Several weeks later I had a routine lupus appointment and saw a new doctor, who frankly was very rough with me. I was calling her all names in my mind and thought how cruel she was. She then told me I had tested positive for fibro on all 18 points. She said it was probably linked to the lupus, and, did I know I had TMJ? That was all linked too. I didn't know whether to laugh or cry!
She told me to google for more information as she had to dash off for an emergency.!
I saw my GP a few days later and asked him if he had suspected it, and really to hear what he thought.
Not only had he suspected fibro, he had contacted the rheumy department to see if they thought the same, hence the examination. I guess he didn't want to say anything unless it had been confirmed properly.
I consider myself lucky to have a GP who is on the ball, as so many of you have had to struggle for a diagnosis.
Nancy
My rheumey consultant reconised my fibro right away when i explained the symptons to hin x
My comment re-Other
I was 1st diagnosed with PMR at the age of 36ish after every blood test my GP had given me, I was fast tracked to the hospital and then diagnosed with LUPUS/SLE, I was treated brilliantly for approx 10 yrs, then I had to move to Manchester due a death in my family and I was required to be closer to family. Refered to Rhuemy and was informed that it was RA, after another couple of yrs I was told it was now Fibro. I am 60 this yr and my symptoms are more like LUPUS than Fibro but been discharged from Rhuemy (taking up space that a ILL person could make use of). Not sure how to get a different opinion GP won't acknowledge that I KNOW my body better than anyone. I also have Long term Depression, Anxiety, Asthma, IBS, Chronic Aneamia, Acid Reflux, and in the last 18 mnths I have had at least 8 Chest Infections and near monthly Water Infections, UTIs. I sometimes feel like I'm always whinging and at my GP but getting nowhere.
Sorry for going on but once I got started I couldn't stop thx for being there.
Sending Gentle Soft Hugs to everyone
Dee xx
My comment
In general GPs have not got a complete understanding of this illness and as Missymaz comments, they tend to brush it off as being all in the head and get on with it.
My formal diagnosis took about 30 years.
Because I suffer from chronic depression, every time I went to see my GP all my issues were put down to depression.
I saw a locum doctor about 30 years ago who said I had something called Fibromyalgia and Chronic Fatigue Syndrome.
When I then saw my regular GP again he completely ridiculed me, laughed at me and so I never mentioned it again. He said there was "no such thing".
I only got my formal diagnosis because I moved home and started seeing a new GP.
I always knew there was something wrong with me and that it wasn't in my head, but I was made to believe that for too many years.
Wow. Loads of feedback here! Mulling it over I think I can honestly say my diagnosis was neither hindered nor lengthy. Hope that's useful
No one seems to analyse mediccal notes and 5 minute consultation focuses on here and now rather thankinking it to previous. It took me 6 years to get a disgnosis by which time i was on my knees. I am td there is more chance of reducing symptoms and having a more effective management okan if disgnosed within 6 months!! Really!! Who here has had such a quick diagnosis?
getting diagnosed and getting gp to believe what im going through
Personally a raft of symptoms that sometimes mimicked other conditions e
I had an old fashioned GP so he never joined the dots.
Also depending on where you are in the country Rheumatologists are better at getting to diagnosis than others If I had not moved house I may have been wheelchair bound after a c!early superfluous neck operation!
