Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

Thank you for your reply Clarella

My thyroid results have never been mentioned by the Dr to me, so that's a new line of enquiry I hadn't heard of yet. I didn't even know my results were slightly raised until I asked for a print out. Those bloods were done in March so will be interesting to see what shows up in the bloods I'm due to have now.

Will also request if I can be tested at the same time for
*Thyroid antibodies
*Vit D
*B12

Thank you CFSKate also for that list. The link you posted looks very comprehensive, will print out and read bit by bit.

Tiptops- the GP might not agree to do antibodies, but emphasise symptoms and they may do a tsh repeat. It can be a grey area, but could be something to monitor.

Do you get constipated? Is there any thyroid disease in the family?

Well my private apt was a disaster - it's left me down & quite despondent

Sorry Katy :(

I saw the GP today about my rapidly deteriorating mental health.

Kinky how horrible to find out that those attitudes are in your own family who should be supporting you I completely understand why you are unable to ignore it.

Knowing how people at work view this type of illness is definitely contributing to how bad I feel emotionally. I know my absence would be treated completely differently if I had something everyone understood and believed in.

would be treated completely differently if I had something everyone understood and believed in

This is so true for most of us I think

I am very depressed today

Katymac I am so sorry you are feeling down today. I know what you mean about being treated differently with a better understood condition. I had an MRI recently to look into MS as a cause of my neurological symptoms. I have only told a couple of people who are worried for me - and surprisingly sympathetic! But apart from being reasonably sure I don't have MS- I am not myself worried. MS is better understood, better known in the medical world,- more treatable (and I am already past my younger years so obviously if it is MS its not the sort that gives disability very young), and there is some support and most of all -understanding. Why would I worry? If it is - well it is. I'll cross that bridge when I come to it.
Was your private specialist negative? (are gentle hugs allowed?)

I have a lot of neurological symptoms - very bad nerve pains, pins and needles everywhere, autonomic dysfunction, periodic numbness and weakness. But unless you actually have lesions on your brain or spine or inflammation or some kind of physical injury like a disc issue - nothing will show on the MRI scan.

I think the neurological side of CFS is very poorly mapped, there's not much info or research into it. Quite a lot of doctors aren't aware of it.

I have experienced exactly the same.

My combo of hypothyroidism and hypermobility syndrome just seems to mean I go down hill more easily than others, when extra pressure is on me eg pregnancy etc. it's always been like this. But I could hide it before - I haven't been able to with a child.

Most who have thyroid issues never feel great but are not disabled by it. Thyroid stuff gets treated a bit like this anyway, ive always felt if it was diabetes or Ms it would be more understood/ sympathetic. I've felt like a total fraud. Which has affected my mh and led to a kind of trauma.

Please try not to let it get to you too much - you just haven't found the answers yet or the right people to help you.

I've strangely found something called the pain tool kit very helpful. I think the guy is condescending but it's finally helped me 'get' how I have to manage myself and have 'set back' plans.

The biggest thing is getting my dh to 'get' it.

To clarify; people think you're cured by taking the medicine for thyroid.

The conventional medicine isn't totally correct and they haven't invented an ideal one.

People get hold of under the counter stuff. I'm too chicken currently.

Sorry to hear about your disappointing appointment, katy.

More and more people at work have been noticing my weight loss - I find it is actually easier to fudge a bit and just explain about the recent eating issues, and maybe slide in later the CFS/ME it follows up on. I feel really weird about it. But unless I start wearing really baggy clothes, I can't really avoid people noticing (and I guess that wouldn't do it, either). I'm also starting to get really cold! I never realised how much insulation a layer of fat is.

I counted my calories, and it doesn't seem to actually explain my weight loss. I appear to be eating about 1100 calories a day. Back when I was heavy and actively trying to lose weight, I'd diet by eating 1200 calories/day. I'd slowly lose about 1/2lb a week. 100 calories less than that does not seem to match up to an increase to 3-4lbs a week. In fact, I've done online calculators telling me that at my current weight and with a sedentary activity level, I would need to eat 700 cal/day to lose 2lb a week! And I'm losing twice that at 150% of those calories. I'm not really sure what is going on.

So sorry katy Do you want to talk about it?

maggi I get the ms thing. I'm awaiting a repeat MRI and if that's still inconclusive will be having a lumbar puncture to see about MS. My Neurologist is confident it isn't MS though. If it were, I understand how you feel about different treatment plans and wider acceptance.

1100 calories a day isn't very much even if you're not moving around a lot.

That said I've just lost 5 lbs in 3 weeks for no apparent reason other than something's gone wrong with my nerves again - massive pins and needles, weakness and I've lost sense of taste and smell.

forums.phoenixrising.me/index.php?threads/trial-by-error-continued-pace-team’s-work-for-insurance-companies-is-“not-related”-to-pace-really.41309

Katy - were you talking to your gp about increasing your b12 injections? (Apols if not as I've been away from the thread for a while)
My gp has agreed that I should inject myself - they won't prescribe for me as my levels are not low enough and its not in the nice guidelines for cfs/me despite referencing dr myhill recommendations.
I'm a member of a pernicious aneamia Facebook group which has recommendations of suppliers if you are thinking about going it alone.
Let me know and I'll pm you the link.

Ive lost weight too recently and am freezing - wearing 5 layers today :o
I just don't have an appetite anymore.

I feel the cold too although I have not lost weight - but am petite to start with.
I've had neurological symptons as a major part of my CFS - but most of them have improved somewhat after taking vit D and B12.
I take B12 drops sublingually (you sort of swish it and hold it under your tongue for as long as possible for it to be absorbed directly through the mouth membranes). I wonder if that would help to keep your levels from dropping to fast Katy if your B12 injections are not often enough.

maggi Do you buy the b12 and vitd online?

Well, I had an.... incident.... with the cat this afternoon and had to visit OOH this evening to get my wounds checked out. Having to list the medications I'm on was interesting

Alice what happened? Hope you are all right - well not too badly battered!
I mix and match a bit - sometimes order online (especially the D-ribose which seems to be essential for me) but D and Vit B12(and magnesium) I can buy from my local health store. I need to get more Q10 any one got any recommendations?
I think there are quite a lot of conditions (Thyroid, DM, Lupus, RA etc) which have debilitating fatigue and or pain, which most folks are not aware of.
Don't nursing Mums need extra calories Murmuration? Are you eating mostly low carbohydrate?

I went to the local private hospital to try & get more B12 as my GP had refused

The conversation was depressing;

no dr will ever give you more B12 than every 12 weeks as that's what the NICE guidelines say(it isn't)

It's easy to overdoes on B12 (it isn't - & what are the symptoms? Dr - I don't know)

you can't need it more often (I do)

lots of people say they improve with B12 but it isn't real (well fine but a placebo works even if you know it's a placebo)

Can I do anything else(suggestions? Dr - no not really)

Gee thanks that was £160 well spent

So I've been researching B12 overdoses & it appears I have been overdosing with my 12 weekly injections anyway as I show the signs - acne/zits - I even saw my GP in August about my zits & got an antibiotic lotion

So I don't know where I go from here - I am still wondering about half/quarter doses more regularly

Oh & on Dr Myhill's site it says " Magnesium and B12 Injections - what to do if your GP refuses to give

Magnesium and B12 injections are so helpful that it is pointless progressing onto other things without trying these first. Below I set out the options that I see as available to anyone to whom I have recommended these injections.

1. Some GPs are unwilling to prescribe the magnesium and B12 but are prepared to inject them. In this event I can supply the magnesium and B12 and the GP's practice nurse should be able to inject. "

But she won't, I asked

So I'm taking floradix & I just found out some (or all) are passing through completely undigested

After the questions about tests here, and realising I have no idea what they've tested on me, I'm trying to take charge a bit more. I saw the GP today and asked for printouts of my previous tests, and he also took a new set that he said he could email me the results.

He said they don't do vitamin D or B12 unless other tests suggest it, because it is very expensive, although I got B12 tested a year ago when the neurologist requested it. Taking a look at my tests, my calcium, which is the marker for D, is very near the low end (I'm 2.21 and normal is 2.20-2.60), as was my B12 (at 294 with normal being 200-940). I'm already taking some vitamin D supplements, I wonder if it would help to take B12.

He also included the letter to him from the registrar who blew me off a year and half ago, and it just made me mad again. "no organic cause" and also "discussed changing her antidepressant" which I'm NOT on for depression! It just so happens the meds the Dr in the US gave me when suspecting POTS happens to be an antidepressant as well. Of course I don't want to change that, I had the closest thing this country could get me and my heart rate was touching the lower end of 200 on it. Once we were able to get it for me off-license, my heart rate is physiologically normal. It has nothing to do with depression! They obviously listened to my story about my heart rate and decided that I was completely making it up, as I can see no other way they would say there was nothing organic and suggest CBT as a treatment . She suggested my job plus a toddler was the cause of my fatigue I suspect that was exacerbated by the fact that the registrar used to do the same work I do now, and 'remembered' how tiring it is. She talked about that when we spoke. Also blamed my weight for my fatigue.

Okay, I should just calm down as my GP is on my side (if a bit slow with things at time) and the weight loss has at least ticked some kind of 'hey, pay attention' box in the medical community. On the plus side, my BMI has dropped from 36.6 down to 26.6! So I've gone from obese to almost not overweight anymore. At least they won't be able to blame my weight for my fatigue (I suppose, unless it all comes back as mysteriously as it came off, although I will definitely try to pay attention for that happening!).

Some doctors are well up on CFS, some know fuck all about it but believe it exists, some think it's all in the mind.

You can't really expect much of a random registrar, although it would have been nice if she hadn't been an arse.

Find a good CFS clinic - there's an excellent one at King's College Hospital in London, but there are others around the country, or a good CFS specialist. Stick with someone who understands CFS and don't waste time on doctors who don't.

I was recently told by a random GP (my own GP was away) that my potassium level was normal. I had been experiencing episodic weakness and paralysis, and ruling out potassium paralysis was important. He made out that I was mildly hysterical for even considering it.

When I went back to my own GP I was told that a) at 3.5 it was bang on the very bottom of the normal range, and b) people with potassium paralysis's blood potassium level is often normal between attacks, but it drops sharply during so that's the time it needs to be tested. I had also taken a few doses of potassium salts before I took the blood test because I felt so dreadful, so it may have been below normal, if I hadn't.

The upshot was I have indeed been experiencing low potassium paralysis. It also turned out my vit D was very low even though it had been normal a couple of years ago.

In short, as your levels are low, it's well worth supplementing calcium and B12. A CFS unit will do a vit D test as a matter of course.

The vitamin D test used to be expensive. It no longer is. If you can manage it, get a new GP. (What an odd thing to say "if the other tests indicate low vitamin D....living in a country with no sunshine is an indicator that your vitamin D is probably low.") or pay to have the tests done privately. Calcium levels are not an indicator of Vitamin D levels.

So sorry that you are all having such trouble getting your illness(es) recognized as an illness.

Good to see everyone posting test results.

Sadly doctors are now almost completely driven by results, rather than clinical symptoms, and the majority seem not to understand the difference between a test result being within range and being optimal.

For that reason, and that reason alone, I was diagnosed with CFS in 2010, when I actually had a serious ferritin deficiency, an equally serious vitamin D deficiency, low folate, low B12 and a failing thyroid.

Since then I have done a lot of research and now I am almost completely well. Had I accepted the initial diagnosis, I cannot imagine where I would be now.

To the poster with the TSH above range and FT4 in the bottom half of the reference range, you already have a thyroid problem, which will cause any number of symptoms. There's about 300 to choose from. The problem will be to get an NHS doctor to recognise it

To the poster with B12 under 300, you need to know that it needs to be over 500, and preferably a lot higher, to prevent permanent neurological damage.
It's dead easy to supplement, so you can do that yourself, but with a level that low, you do need to be checked for pernicious anaemia.

It seems that once you have a CFS/ME/fibro diagnosis, the medical profession blame everything on that diagnosis, whether it is related or not. Forensic examination of test results and taking responsibility for your own health can make a real difference.

Oh dear, Please, really? Why didn't the neurologist, who requested this test, say anything? Looks like B12 is fine with breastfeeding, so will go ahead and take some of that!