Please tell me what's wrong with me - at the end of my tether

[FinallyDiagnoseMePlease]

Hi,

10+ yrs ago I had Glandular Fever. That seems to have triggered whatever is wrong with me as I've been ill ever since.

About 6 months after it was confirmed I had Glandular Fever I was diagnosed with CFS/ME, as I was not getting any better.

I'm not convinced that I 'just' have CFS/ME. My symptoms are listed below;

Severe tiredness
Headaches
Dizziness
Balance - feel like I'm falling backwards
Pain in hips
Hives and rashes on jaw/face/neck - no known trigger
Flu-like feeling
Memory issues - Long term fine, short term not very good
Weakness in hands/arms/legs/lower back
Burning feeling in skin - back of calves and side of hand/arm
Pins and needles - arms, legs and mid back next to spine
Always cold, even in very hot weather
Stiffness in body in morning
Difficulty picking things up, opening jars etc
Get words mixed up when speaking and forget what I'm saying halfway through a sentence
Painful stomach - on Omeprazole
Muscles feel tight and 'squeezed'
Hands and fingers always feel tight and swollen (don't look it) plus skin on my finger pads are normally wrinkly??!
Back pain - physio didn't help
Sometimes have difficulty swallowing
Sometimes eye blur - eye examine normal
'Flashes' in eyes when I turn my head to the side (not every time though)
Sometimes shake
Dry eyes
Palpitations

I've been to the doctors numerous times and they always just do a blood test which comes back normal every time. I've asked to be referred to someone but 'There's no one to refer you to'.

I have reached my limit now. My tiredness rules mine and my family's life.

I would happily live with all my other symptoms if I could just get rid of my exhaustion.

Please can anyone help? I'm even willing to go to the woo side if it helps!!

Hi Coco. I've never really been sunburnt but I burnt my wrist on the oven shelf a few months ago and the pain from that is the same as the burning sensation I get.

Were you referred to someone who prescribed you the gabapetin or did your gp prescribe it?

When I get the burning pain, touching the area makes it even more painful. Even my clothes brushing the area makes it a more severe pain. Do you get this?

TIA

Yes, I do. My jumper was killing me yesterday, but I'm in a flare atm. The gp gave me the gabapentin. I still get the pins and needles and creepy (like insects crawling over my head ) when Im not in flare and if I miss a dose.
What you are describing is a classic fibro sign but Im one of the people who think fibro is part of a larger auto immune disease, like a side effect.

That B12 needs to be at least 500 to avoid neurological symptoms, which. Igbo include your burning feelings.

What does your doc say about it?

Hi Rockin,

My GP didn't seem that bothered about it, even though she said she'd been reading up on b12!

I told her that other countries treat you when your b12 is under 500 but she said here the lower range is 150 and that it's hard to measure your b12 because every lab does it differently.

I've ordered my b12 spray so will start self medicating now I've had 2 quite low b12 results and the doc doesn't seem worried.

Your calcium looks fine. High calcium can be a sign of parathyroid issues which can cause many of your symptoms so I was wondering about that. Still, that's one thing you can rule out.

There's a much better B12 test called Active B12 (holotoc). I think it's only done at my hospital at the moment, St Thomas', but it measures the active B12 in your blood, rather than just the levels of B12 as a percentage isn't absorbable. I think you might be able to get it done privately, I know the company has a website.

Thanks Best.

I had read about getting your active b12 measured but assumed that's what the NHS did! I'll look into it, thanks south

www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

www.drmyhill.co.uk/

Thank you for the links CFSKate.

Please please ask for under active thyroid test.i had many of theses symptoms which I am sure would have got worse as yours have without treatment. GPs do tend to jump ahead of the obvious at times.

OP, the majority of that list of symptoms do sound like ME/CFS symptoms.

Do you get payback, i.e. for everything you do, you have to pay for it. So e.g. you go to the shops today, that means two or three days before you recover back to the same level?

What happens to you if you have to stand up still, like in a queue?

Possibly some good news for you OP. I can't really read it but it suggests if you get ME after GF your chances of recovery are better.

forums.phoenixrising.me/index.php?threads/surprisingly-good-outcomes-for-people-who-get-me-cfs-after-mononucleosis-glandular-fever.35059

Hi CFSKate

Yes I do have to pay for what I do. Sometimes an activity can affect me for weeks afterwards.

When standing in a queue I get intense back pain and feel woozy. Also feel like I'm falling backwards but DH says I don't sway/lean back or anything.

That's an interesting link about the 11yrs. Plus I was young when I got GF.

Thanks

The ACCEPTED vitamin D level , in UK ,,, is 50 nmol/L , this is just seen as normal, BUT only because most people are that level, ( or often below. )

ACTUALLY research shows that for optimal health , your level should be 100 to 150 nmol/L. This level is that which would be found in people living a natural, outdoor , healthy lifestyle, , in a normal sunny climate. For example , farmers, lifeguards, etc.

We in The UK, do not have the opportunity to live like that .

I would like to suggest , that IF you were to have a really 'normal' level ( 120 - 140 ) , you may find things improve from your healths' perspective. . You may need supplements to achieve that level,( very low cost - from Amazon etc.) .

   D3  supplement ,    sunlight,   or sunbed may be the way to go./ 


Get  back ,   if you are interested.   

BTB Healthy.