CFS/fibromyalgia diagnosis

[IamAporcupine]

I am aware that CFS/ME is a diagnosis of exclusion but I am wondering if you (who have been diagnosed or are in the process of) could tell me what test you have had? Have you all been seen by a neurologist for example?

The reason I am asking is because I work in Medical Genetics with a population of patients whose symptoms very much overlap those of CFS/ME. However, I have recently talked to a CFS physiotherapist who completely denied that maybe, just maybe, some of her patients should be seen in our clinic instead. I was very surprised by how adamant she was.

So I am wondering how much misdiagnosis there might be?

Lots is the answer. Not just CFS/ME, but also Fibromyalgia.

I was diagnosed with CFS by an endocrinologist. He ignored vitamin and mineral deficiencies and blood tests that indicated I had an underactive thyroid, sent me for an oral glucose tolerance test, although there had never been any indication that I might be diabetic and when that cane back fine, he diagnosed me with CFS and discharged me!

I had to fix myself in the end. Now fit and well.

I had lots of blood tests at my GP to rule out thyroid problems, vitamin D, Lyme disease etc. The GPs in our area have a flow chart which shows which tests to do.

I wouldn’t have wanted to see a neurologist as they don’t seem to know any more than anyone else and I’ve heard some pretty bad experiences from people who have.

The difficulty is that we don’t know enough about ME/CFS to even have a clear definition of what it is - it could be several different related illnesses. So with different people working off different definitions there are always going to be disagreements about diagnosis.

NaToth - I'm interested to hear how you overcame CFS.

Very few tests.
My GP did the basics blood count, vitB12 (completely ignored the fact it was VERY close to the lower acceptable limit) and TSH I think and then sent me to the ME clinic when it came out all ok.

Consultant there did an intake, no blood test at all just basically listened to my tale and confirmed that yes I did have ME.

I fully agree with having to do it all myself. Nutrition and supplements is what made the difference for me along side some personal work (basically stop being a martyr, regain some self confidence and start treating myself like I would treat anyone else).
Quite a few people now see ME as an autoimmune disease too, triggered by a trauma (couod be emotional, an illness, giving birth etc etc) with underlying disgestive issues. That certainly would fit the bill for me.

I had lots of tests, but only 4 years after diagnosis, when I went back to my Gp with a print out of all the things they should have done and didn’t bother. They basically diagnosed me and then left me to it.
Once I had made my point, I had various blood tests (nothing obvious found) a physiotherapy referral (useless, she gave me some exercises to “build my energy,” but since I was already using every scrap of energy I had, made no difference) and a neurologist referral, as some of my symptoms overlap with MS. He confirmed there was something genuinely wrong with me, that it was neurological but not MS and he didn’t know what it was. So no further treatment.
They declined to give me massage therapy, which potentially could make some of my symptoms better, as they said that they are not willing to give treatment which will make things more bearable, only treatment which will cure, ie if 10 weeks of massage therapy would fix the problem, I could have it, but as the problem is chronic, they won’t let me have indefinite treatment.
So now I am back to managing on my own again with no treatment.

I strongly suspect that a number of people diagnosed with ME/CFS/fibro are actually either hypothyroid or have vitamin deficiencies.

I am hypo but it took 8/9 months of testing for my blood tests to be out of range enough to get a diagnosis. I felt horrendously unwell during that time and for a number of months prior to even going to the GP. Fibro and CFS were mentioned during that time as possible diagnoses! I was referred to neurology, dermatology and the MSK clinics (spine and ankle!). I also had chest X-rays. All completely unnecessary. A prescription for levo was all I needed! There is something very wrong with the references ranges and hypothyroidism diagnoses (and treatment) in this country.

Agree 100% @MiniMum97.

I never had CFS/ME. I had low vitamin B12, low folate, very low in range ferritin, very low in range vitamin D and an underactive thyroid. Now all those are sorted, I'm fine.

What I don't understand is why a consultant thought it was easier to diagnose me with CFS and send me on my way, then treat the issues I actually had.

Thanks everyone, very interesting.

@NaToth - what you are saying about the consultant's diagnosis of CFS is similar to what I perceived from this physiotherapist in that she didn't seem to be interested in finding a correct diagnosis for her patients

@ScarletAnemone - not sure why you would not want to see a neurologist if that might help with your diagnosis?

Another question - how many of you have 'muscle twitching'?

I have muscle pain and stiffness along with twitching muscles on and off. I used to have quite sever muscle cramping and twitching in my legs but that has mostly resolved with taking magnesium.

In addition to my previous post I meant to also add that I think central hypothyroidism is to misdiagnosed (as it cannot be diagnosed with TSH testing only) and it's poorly understood/lack of awareness by GPs.

Following with interest. Yes to muscle twitching!! Mostly when I'm trying to rest but occasionally when I am anxious/feeling rubbish it starts. I am taking folic acid for extremely low folate levels. About a month in and there has been improvement although the last few days I could sleep standing up I have had a busier than usual week though

I've lost count of the number and type of tests I've had over the years where all results have been within the normal range, yet ME/CFS continues if I don't follow my regime...which btw, I developed through trial and error, out of sheer frustration. In the beginning I had an understanding GP but unfortunately he retired and since then I've basically been left to my own devices.

When I visit a new GP or other health professional, naturally I mention ME/CFS and closely watch their facial expression, some get this 'look of terror' because they don't have anything to offer/don't know anything about it/etc, while others will turn the tables and it's 'all in your head'. I think those of you with ME/CFS can relate to this?

As someone above mentioned, I've had a few tell me to 'build up my energy levels' also inferring I'm a malingerer. In the beginning I tried their 'remedies' but all that did was set me back so far that it took months to get back to feeling human again.

IamAporcupine yes, I get muscle twitching and/or cramps if I don't drink enough milk...2 cups a day keeps me on an even keel.

For pain relief I use a small battery-operated TENS machine, as recommended by a physiotherapist which helps a lot and medication-free. While I'm not against medication, I prefer to use an alternative where possible.

A combination of good diet, restful sleep and not over-exerting my mind/body is what works for me, but of course, I'm always reading and looking for suggestions from other sufferers and often try something that has been mentioned.

to other sufferers, it's not something you would wish on your worst enemy and not being believed is not my idea of fun!

Porcupine I would see a neurologist if I thought there was anything they can do, but I have no confidence that they can. There just isn’t the knowledge yet - we’re still in the dark ages with this disease.

We desperately need more money spent on biomedical research so we can start to understand what’s going on and develop some actual treatments. We’re decades behind where we should be because of the years wasted chasing psychological treatments.

I was diagnosed last year; after I pushed for tests the previous year having suffered an almighty 'crash'. I was below the 'normal' level range of vit b12, but when they did the PA test it came back negative, so they wouldn't give me any.
I had diabetes, thyroid and other tests, none were 'of concern' and therefore I was given this diagnosis. I asked to be referred to neurology but this was declined.
It has floored me because I really don't feel they were looking for an answer, they seemed to just want to give it a label. I'm stuck with the CFS/ME label with nowhere to go. I have completed a 6 session course at CFS clinic, but now in my own.
I do have twitching, in fact both legs are doing it now. The twitching occurs all over, at different times, so if you need a guinea pig, I'm happy to help?!
I'd love some conclusive answers and a strategy to feel better. I'm determined not to let this destroy me (still working full time, but that's to the detriment of the other areas of my life). I've gone from being a really positive go getter to being a shadow of my former self, whilst fighting to get back.
I hate this label.

Hello IamAporcupine

No one has mentioned CFS or ME to me but I have a feeling it's a matter of time. I've been back and forth to the GP for the last couple of years (having previously always been extremely healthy) with various symptoms and getting nowhere.

Menopause and depression have been mentioned a lot!

One of my first weird symptoms was severe twitching. It's sometimes worse than others and seems to happen in one area at a time then move on - groin, lip, hand, thigh...etc.

Stomach issues, stiff and painful joints/muscles, exhaustion beyond belief.

A lot of my blood tests have come through just scraping into the normal range. Only things out of range have been B12 and a positive ANA. GP is not interested in following either of these up.

I have muscle-twitching. I've had it for years and the neurologist I saw diagnosed it as sciatica, although a subsequent MRI showed that my sciatic nerve is not compromised. My toes move independently and I have very little feeling now in one foot, but my GP will not refer me back because I 'already have a diagnosis'.

I've read the NICE guidelines for diagnosis and frankly they are (a) vague and (b) depend on correct interpretation of any tests done, which is really where the whole thing falls down.

This is why we get mis-diagnosis and I agree with a PP that the NHS knows nothing about secondary or tertiary hypothyroidism, which is appalling, given how common it is.

I had lots of blood tests with GP all came back normal. I was really ill for a few months and then was given a diagnosis of ME by GP which was then confirmed by an ME occupational therapist at the hospital. It was a shock to me tbh.
Then I was sent on my merry way to deal with it myself as there's 'nothing the NHS can do'. Never been seen by anyone else.
I get a lot of muscle twitching and buzzing.

And the worrying thing is of course @Scarscar that you may have been given this diagnosis purely because whoever looked at your test results did not know how to interpret them.

That’s how a friend of mine with a pituitary tumour got diagnosed with fibromyalgia!

I have the muscle twitching, it can get quite extreme, and sometimes my whole leg or back will go into spasm. I have however found a failsafe solution, although it’s not tobeverines taste, and I can’t do it whilst working, but cannabis is a miracle, instantly removes the spasm, and dramatically extends my energy levels, allows me to manage social events almost as if I wasn’t ill.

To everyone’s taste!

AltogetherAndrews ...wow, that's really interesting. A while back I read up on cannabis and it sounded like it might be worth a trial, but then I didn't know if the reports were genuine, so it's good to know you had good success.

Might look into it more, although my current GP is absolutely hopeless so I may need to look further. Thanks for the feedback!

Thanks for bothering to look into this porcupine

My guess is that misdiagnosis is rife, I know it is amongst the people I met in support groups with the same conditions, when I was first diagnosed as having fibromyalgia & M.E.. Everyone of us went in to eventually get diagnosed with other things, all of us had al least one of these ...

B12 deficiency is a very common one as testing isn't reliable, but doctors are too often ignorant of that. Some doctors don't even realise it's a problem when it is low, plus it's a post code lottery as the range levels vary around the country. I know about 20 people whose CFS/ME/Fibro was this alone, or with other conditions.

POTs is another & is a symptom of B12 deficiency & Ehlers Danlos or a condition in its own right. If you look POTS dysautonomia you'll see that covers a lot of even the weirder symptoms

Ehlers Danlos is another

All of these are conditions that are hard to get diagnosed, needs specialists in the conditions & more knowledge from doctors who think they are rare when in reality they are more likely under diagnosed

I was eventually diagnosed with all 3 of these & they are linked. B12 injections help POTs & hypermobile Ehlers Danlos

This link explains the problems with Pernicious Anaemia & Functional B12 Deficiency Diagnosis & how important early diagnosis & treatment is to prevent permanent disability

Hope this helps someone else not to go through what we all went through..l

www.b12deficiency.info/

I had loads of blood tests that all came back normal, was referred to Rheumatology where after even more blood tests I was diagnosed with Fibromyalgia. 9 years later I was diagnosed with CFS/ME after suffering crippling tiredness & even more pain than the fibromyalgia, was diagnosed by local ME service, had an appointment with an Occupational therapist at the clinic & then a telephone consultation with a GP who worked part time for the ME service who gave me the diagnosis over the phone, only treatment offered in our area is pacing workshops, went to first session where we were introduced to a patient who told us she had gone from being bed bound to running her own company & running 10k by pacing. Second session had a Q & A in it, several of us were very sceptical about the pacing regime & questioned how we were supposed to fit pacing in our lives ( I'm a single mum with MH problems & a child who is ASD) anyone who criticised the pacing idea was separated from the rest of the group & told to leave, it was a bit like an evangelical church meeting of a cult, if they couldn't brainwash you, they kicked you out before you tried to change anyone else's mind. Within a week I was discharged from the service, I've had loads of meds, painkillers, sleeping tablets, muscle relaxants, antidepressants, vitamins. I mainly manage myself, I've been to the pain clinic but because I wouldn't admit my pain was all in my head or attend a one day a week for 6 weeks "pain management" course ( have you ever tried to spend a full day listening to someone teaching you how to "manage" your pain without drugs when you are falling asleep, totally shattered from the effort of getting yourself up, ready & travelling to the venue, in agony & even more depressed than you were before you started?) I was again discharged as "unsuitable" for treatment. I manage by never planning to go out two days running, resting when I need to ( go back to bed once DS has gone to school) have a cleaner, we live on easy cook food usually in the slow cooker, Monday's spag bol is Tuesday's chilli, shopping is done online both for food & clothing. I'm on antidepressants, painkillers, anti inflammatories, self help with magnesium, iron supplements & vitamins. Avoid as much stress as possible, I don't go out much as I've lost most of my friends since I became ill, I go to my ME group social meet ups a couple of times a month, otherwise I listen to audio books or music, do a bit of crochet or adult colouring, do relaxation, I keep in touch with the few friends I have via the internet. I haven't worked for 8 years now, I'm crippled with arthritis & can't walk very far or very well, I'm on disability benefits, I'm fighting to get my PIP put back to the level I was on as I was reassessed last year & from next week will be totally housebound as I'm losing my motability car which will mean I can't get to the doctors, hospital, chemists , to see my mum or go to ME group social events as I can't walk far enough to get to the bus stop & can't get on & off buses. I never go out alone, either my mum or my son are always with me, I'm waiting to get moved to an adapted bungalow which will make things easier for me.

Oh & vitamin D deficiency. Have a look at the Vitamin D Council website though, as the U.K. are notoriously bad with D deficiency. The prescription stuff is pretty useless, I hear it's synthetic & does little more than correct the numbers, rather than symptoms. I was on it fir years p. Switching to high dose natural D3 for a while helped a lot though

@Altogether

I totally agree & far less harmful than the diazepam & the likes prescribed fir muscle spasms

I have restless legs, it gets worse the more tired I am, I take magnesium & painkillers for it. I get twitches when I'm asleep, my legs jerk, my late partner said it was like sleeping with someone trying to play football in their sleep, it's no wonder I wake up just as shattered in a morning, I get electric shock sensations through my body, can't bare to be touched as it's too painful, sometimes even clothing causes me to be in pain, I can't wear a proper bra any more, it's like my ribs & shoulders are in a vice, I can only wear crop tops. Unless I'm going out or someone is coming to visit I spend my time in pjs. I'm sensitive to changes in temperature, bright lights, noise, even the weather affects me. The best thing that I have found that helps is cbd oil, I've managed to reduce the amount of painkillers I take, I vape the cbd & have lotions & balm for my painful limbs & joints, it helps reduce the sensitivity of my skin as well. I don't sleep to a normal pattern, just in 4 hour blocks, I'm often awake at night & asleep during the morning instead.