Fibromyalgia sufferers... AIBU to think this isn’t it...?

[CrunchyKnot]

The pain I experience is like I can feel all of my bones, right into my toes and fingers. My ankles feel like I have clipped them with a scooter IYKIWIM. I thought fibro was more muscular. I can also sleep for 24 hours. And then sleep again. Should I be getting a second opinion?

Pain and fatigue are symptoms of fibro but I believe a large % of people with fibro probably have something undiagnosed

I'd say as time goes on, it gets more likely it's fibro. MS is progressive very often, lupus can get life threatening, or your thyroid stops working completely. Things progress, new symptoms emerge. But if your bloods are still showing nothing much five years later, chances are it's fibromyalgia. There are a lot of symptoms and some of them are quite distinctive. Once you do join a group and meet others to compare notes, you get to know you fit with those symptoms.

OP do you know where in the range your thyroid hormones are?

The NHS does not routinely test Thyroid Peroxidase Antibodies, the most common thyroid antibodies. It tests two different antibodies. I myself was suffering unexplained joint pain and fatigue for many years (along with symptoms I thought unrelated) and was tested 3 times and told I had no antibodies. I never questioned it.

I was also told my TSH was 'just in range' the range is very controversial and in the UK it is quite broad leaving many people declared well, when they have symptoms and are sick. A GP may see TSH just under 5 as fine. It's not fine. And you therefore need to double check for yourself

There's even more to it than what I'm saying but you ought to get a full thyroid panel which tests TPO antibodies done privately just to rule it out if you can.

I myself was told I had Fibromyalgia and was on my way to a diagnosis of ME. I had chronic dermatitis so saw a private Dermatologist and she got my thyroid tested properly. Turns out my Thyroid antibodies were sky high more than 100x the range. My T3 level was dire. The NHS doesn't test T3.

It is a huge scandal affecting many women, as a lot of women develop autoimmune illness around peri-menopause.

I have CF (ME) and at times have what you describe. The stress from your break up would be enough to cause this. I've had to end friendship because I physically can't deal with drama.

Just to add, I do have bit b injections because I stopped being able to absorb it, as another poster described.

If you think that, then you are very probably right. Trust your instincts over doctors every time. Unfortunately Fibro is a too often "waste basket" diagnosis dished out by lazy assed doctors

Do you have vitamin D deficiency? as some of that sounds likely to be D deficiency symptoms. Some of us have genetic mutations that mean we need slightly more D than the low UK top of range, or we are symptomatic even when in range

I was diagnosed with fibromyalgia & then also ME as I kept pushing for answers some 17 years ago. It never felt right to me at all, but I had a crap GP. I noticed that friends with cancer & HIV both would have got a fibromyalgia diagnosis if they didn't have these illnesses as they had all of the tender points. This told me that fibro was a response to stress on my body & I needed to find that.

I turned out to actually have undiagnosed Pernicious Anaemia & Ehlers Danlos, along with co morbid POTs & several issues with metabolising vitamins into their useable form. D, thiamine, folate, B12 .

A private DNA test with the code put into genetic genie & promase picked up the issues with vitamin metabolism & explained why I felt no better with vitamin D treatment & folic acid (I need folate)

Don't give up.. good luck

Agree that it's sometimes used as a go-away word, but sometimes docs do the best that medical science can and still can't come up with a better diagnosis. I've had the detailed thyroid screens and other tests repeatedly, have a tendency to low vit D and folic acid, and a hypermobility syndrome that isn't typical hEDS, plus various congenital issues that could cause anything. So I've been told I can say I have fibro if I want, but it's not in writing so I can still get cheaper travel insurance etc.

I get physio etc to deal with symptoms as needed.

@SingingInTheShithouse

If you think that, then you are very probably right. Trust your instincts over doctors every time. Unfortunately Fibro is a too often "waste basket" diagnosis dished out by lazy assed doctors

Do you have vitamin D deficiency? as some of that sounds likely to be D deficiency symptoms. Some of us have genetic mutations that mean we need slightly more D than the low UK top of range, or we are symptomatic even when in range

I was diagnosed with fibromyalgia & then also ME as I kept pushing for answers some 17 years ago. It never felt right to me at all, but I had a crap GP. I noticed that friends with cancer & HIV both would have got a fibromyalgia diagnosis if they didn't have these illnesses as they had all of the tender points. This told me that fibro was a response to stress on my body & I needed to find that.

I turned out to actually have undiagnosed Pernicious Anaemia & Ehlers Danlos, along with co morbid POTs & several issues with metabolising vitamins into their useable form. D, thiamine, folate, B12 .

A private DNA test with the code put into genetic genie & promase picked up the issues with vitamin metabolism & explained why I felt no better with vitamin D treatment & folic acid (I need folate)

Don't give up.. good luck

Do you mind me asking what happened as a result of the private diagnosis - did you refer this to your GP and get treated, or did the treatment have to be private too?

Did you get your Vit D checked. I get joint pains if mine is 50 or lower even if it doesn’t meet the very low threshold for deficiency in the U.K.

Do you mind me asking what happened as a result of the private diagnosis - did you refer this to your GP and get treated, or did the treatment have to be private too?

@CrowBones

The dna test was just a basic 23&Me type thing, but it was really useful when used with the other sites & did fit with family history & illness. It showed up thiamine metabolism issues for example & my DB was diagnosed with this & PA at an NHS metabolic clinic in Salford area.

Most of it I could treat myself as buy over the counter vitamins. I needed folic acid with my NHS (& home done) B12 injections so I switched to folate & it worked much better. With D I was lucky this was a special interest of my GP & after a chat with her where she owned up that I was right, prescription vitamin D was synthetic & not great compared to natural D3, plus she was happy if both DD & I were above range.

So a mix of NHS & lots of reading & self treatment

I believe NHS Metabolic Clinics can test for this sort of stuff, they did for my DB, but I was told there is only 3 in the country & hard to get appointments

I should don't have much faith my gp is going to do it even though they promised be being referred to Rheumatologist for possible fibromyalgia. I have combination of what feels like muscular pain and joint pain as well as cramping. What they have found so far is pernicious anaemia, hydroids antibodies but tsh within range just, fatigue par for the course, restless legs, raynauds etc etc. Vit D and magnesium all fine. What they haven't found: anything physically wrong, or at least nothing that should be causing the pain at the level it is.

I have days where I can't grip anything not through lack of strength but the pain in my hands is unbearable. On the days I can use them, Im now using a walking stick to get about on the advice of another sufferer. It is massively helping the pains in getting elsewhere which in turn is helping the hands. Still can't help that im too young for this in early 40s but at the same time im just surviving if I don't.

It's all pretty shit tbh. The best they could offer me was too look into fibro, but initially they wanted to bounce me round the houses again for a third time.

It sounds very similar to my fibro symptoms unfortunately, it’s not limited to muscles as it’s a neurological condition rather than muscular. That said, vitamin D deficiency causes joint pain like this - I have to take a max dose of it daily, mine seems to get very low.

Just to add I’ve never had to pay more for travel or even life insurance with a fibro diagnosis as it’s not life threatening (just miserable!)

I should add, I'm not cured of fibromyalgia, my B12 deficiency was left to long without treatment not to do permanent damage, but when I can take all of my supplements etc, it's very much improved.

My Australian cousins deficiency was caught earlier though & they have a different type of B12 more easily available than here & it's better fir some people. He recovery has been amazing & she's a little powerhouse of energy & enjoying life again

@SingingInTheShithouse

Do you mind me asking what happened as a result of the private diagnosis - did you refer this to your GP and get treated, or did the treatment have to be private too?

@CrowBones

The dna test was just a basic 23&Me type thing, but it was really useful when used with the other sites & did fit with family history & illness. It showed up thiamine metabolism issues for example & my DB was diagnosed with this & PA at an NHS metabolic clinic in Salford area.

Most of it I could treat myself as buy over the counter vitamins. I needed folic acid with my NHS (& home done) B12 injections so I switched to folate & it worked much better. With D I was lucky this was a special interest of my GP & after a chat with her where she owned up that I was right, prescription vitamin D was synthetic & not great compared to natural D3, plus she was happy if both DD & I were above range.

So a mix of NHS & lots of reading & self treatment

I believe NHS Metabolic Clinics can test for this sort of stuff, they did for my DB, but I was told there is only 3 in the country & hard to get appointments

Thanks for the response, sounds like you have a really good understanding of your needs. How did you up your vitamin D if not with supplements - through diet alone?

It's interesting that B12 and D deficiencies are being referred to by so many posters. I though B12 deficiency/pernicious anaemia was easy to diagnose as with blood tests but clearly not!

@CrunchyKnot

Would it show up in a blood test if I am peri menopausal?

The GP says it has been brought on by a sustained high stress living environment (abusive partner).

I don’t want to take pills for the rest of my life but it’s unbearable without them

I would suggest, as a fibro sufferer, that the cause may well be high levels of stress. I grew up in an abusive household, and I believe my body has been shot through with adrenaline and cortisol from a young age, and neurologically I have been programmed to be on high alert. The body simply cannot sustain this.

If it is fibro, remove the cause, and start exercising: not too much, not too little.

@SingingInTheShithouse

Sorry to hear you've been left with permanent damage as a result of B12 deficiency, that's awful

Fibromyalgia unfortunately has a stigma attached to it. We now call it fibromyalgia syndrome in recognition that it can affect you in multiple ways, not just pain and fatigue eg IBS and increased need to urinate are often part of it. There does seem to be some links between trauma and stressful life events and its onset.
Please ask if your GP can refer you to a local pain service. They can confirm your diagnosis and help you improve your quality of life. The Flippin Pain website has lots of really good resources about managing persistent pain conditions. Relaxation, pacing keeping active and doing things that are important and pleasurable to you are really important. Medication has only a very limited role, which is why some GPs (but there are some amazing ones out there too) aren’t that interested because they can’t just prescribe something to treat it.

and increased need to urinate are often part of

That's a very common manifestation of B12 deficiency as you wee out what your body can't process. I was averaging 5-6 trips to the loo a night before B12 injections

Thank you @CrowBones. Not ideal, but mostly I cope fine & I'm way better than where I was pre treatment, so it's not so bad

I have ME with significant joint pain. It feels right in the middle of the joint. I'm also permenantly tired (and a huge number of other crazy things!)

Always get an Active B12 blood test if you can. It tells you how much is being actively used by the body. Normal B12 just gives you total B12 which might be just sitting around doing nothing. You can (as in my case) show adequate B12 on a normal test then find you are scraping at the bottom range for active.

With regard to Vit D you need to aim for being high in the range even the upper range is low in the UK. Dr was fine with it being 40! Despite cramps and hypothyroidism where you critically need vit D

Folate is an absolute MUST as pp said.

Magnesium and Selenium are also key. Virtually no women get enough magnesium. If your adrenals are shot to pieces, from sustaining high levels of cortisol, you need plenty magnesium and lots of vit C, and B complex minimum.

Multivitamins don't cut it. You need quality forms of the individual vits in fairly high doses.

*Always get an Active B12 blood test if you can. It tells you how much is being actively used by the body. Normal B12 just gives you total B12 which might be just sitting around doing nothing. You can (as in my case) show adequate B12 on a normal test then find you are scraping at the bottom range for active.

With regard to Vit D you need to aim for being high in the range even the upper range is low in the UK. Dr was fine with it being 40! Despite cramps and hypothyroidism where you critically need vit D

Folate is an absolute MUST as pp said.

Magnesium and Selenium are also key. Virtually no women get enough magnesium. If your adrenals are shot to pieces, from sustaining high levels of cortisol, you need plenty magnesium and lots of vit C, and B complex minimum.

Multivitamins don't cut it. You need quality forms of the individual vits in fairly high doses.*

I second ALL of this with bells on

But will add. If your B12 results are in range & GP not listening/understanding your symptoms. Look up "functional B12 deficiency" on the NHS page & shove it under their nose

My DD has this diagnosis as her blood results were in range & it took a fight to get her injections, but boy was it worth it as after 2 years of severe ill health & no help at all, (even hints at munchausens by one shit doctor who resented my getting second opinions) those 6 x B12 loading dose injections had her out of a wheelchair & sleeping almost normally f more, in under 2 weeks

I meant to add. The treatment is the same as PA, so the name doesn't matter so much

@SingingInTheShithouse
My DD has this diagnosis as her blood results were in range & it took a fight to get her injections, but boy was it worth it as after 2 years of severe ill health & no help at all, (even hints at munchausens by one shit doctor who resented my getting second opinionshmm) those 6 x B12 loading dose injections had her out of a wheelchair & sleeping almost normally f more, in under 2 weeks

Wow!! Your dd is so lucky she had a mum willing to do research and fight on her behalf! That's amazing!

Yes, there's this really rubbish, elitist, egotistical attitude from some doctors when you are chronically ill and start looking for answers, and they are too proud to say 'I don't know' or take time to do some more in-depth research. Some health professionals would rather gaslight you and the dreaded suggestions for antidepressants, referrals for mental health clinic etc start. I think women are treated quite badly in the NHS overall, treated like we're hysterical, and our hormones and how they relate to autoimmune illnesses aren't taken any notice of.

Any improvement in my health is through my own testing with occasional private help. I'm sad to say every single GP I've seen has been pretty clueless and some have been downright rude and I suffered very poor quality of life for years as a result.

I've noticed so much attention given to fatigue associated with 'long covid' but virtually none given to people with ME, CF, post flu etc before this.

Fibromyalgia is a controversial diagnosis, partly because it comes with a degree of stigma. Part of the problem is that doctors and scientists haven’t been able to pin down what causes it or even if it’s a single disease or a collection of diseases with related symptoms. Not knowing what causes it makes it hard to treat because no one understand what it is that needs to be corrected. That’s why the treatments are symptomatic rather than curative. Doctors find this frustrating too, just like patients, but when they’ve ruled out things that can be treated that’s what’s left. I have heard it explained using the analogy that a lot of illnesses like arthritis or MS are ‘hardware’ problems, while fibromyalgia is a ‘software’ problem. This may support the idea that significant stress can really make it worse. It doesn’t mean that doctors think patients are making it up or are mad, but sometimes major psychological stressors can legitimately manifest with physical symptoms.