ME/CFS is a real illness

[garlicbutter]

Oh, I just need to sound off after things getting a bit heated on another thread.

Fibromyalgia included also. I don't get huge amounts of pain, but do spend huge amounts of time resting so that probably helps.

I'm pissed off that my occupational therapy turned out to be "Learning How To Be Ill" and that I'm going to have to appeal (again) against my DLA refusal.

I'm pissed off that I spend so much time on Mumsnet because I can put it down every 20 minutes and change my activity/position. Also that it's practically my only contact with the outside world.

I'm just generally pissed off

Fellow knackered whingers, feel free to rant!

I'll be back in 20 minutes.

[nattygk]

I have fibro had it for 10 years and it sucks pain is horrible the fatigue is worst and the brain fog migraines oh and to top it off I have a shattered elbow and waiting for surgery I just sometimes want to scream

[CFSKate]

newer thread here
www.mumsnet.com/Talk/general_health/2618526-CFS-ME-Fibro-spoony-support-thread-2?pg=14

[CFSKate]

forums.phoenixrising.me/index.php?threads/stat-news-bad-science-misled-millions-with-chronic-fatigue-syndrome-here's-how-we-fought-back.46944/

[Badders123]

Knackered whingers!?
I have found my people!!!
Was dx with cfs in 97
Been ill since 95
Relapsing/remitting
Currently in peri menopause and undergoing tests for sleep apnoea
Life is NOT fun atm
gentle Hugs to those that need them

[KeelaToo]

Hello - and apologies for posting on a very old thread.

I did a search for ME/CFS and this one came up - and it turns out that the first post in the thread was made on the day that I became too ill with ME to work again. :(

However since then I've taken up campaigning on various ME issues and I also keep a blog with info on the pacing techniques that helped me.

I think there is now a possibility of real change in the ME world and I recently wrote a post encouraging folk to sign ME petitions.

There are two petitions linked in this post.
sallyjustme.blogspot.co.uk/2016/09/petitions-changing-world-one-signature.html

I wonder would any peeps on here consider signing and sharing these petitions?

Many thanks.

Sally (aka Keela Too)

PS I am a mum of 4. They are now all adult.... however when I first became ill with ME the youngest 2 were teenagers and still living at home. I remain very grateful that I had already got them organised to do their own washing etc. so that my incapacity, when it hit, was not so much of a shock to the running of the house!

I think it must be most incredibly difficult to come down with ME when children are small. xx

[CFSKate]

I've just read in Chat that Emily Collingridge has died. She was 30/31.

www.mumsnet.com/Talk/_chat/1433170-I-am-so-sad-and-so-angry

[sportsfanatic]

When GPs order blood tests they tend to order the same set for everyone. DH was really ill with bizarre symptoms such as memory fog, pins and needles, always cold, panic-like attacks, migraines, fatigue - too many symptoms to name really. We were frantic to get a diagnosis and of course, after they had ruled out MS and motor neurone disease months later one 'specialist' came up with fibromyalgia. If in doubt use ME, CFS or fibromyalgia it seems (diagnosis by exclusion), which is hardly helpful those genuinely suffering from one of these horrible conditions.

Finally, the GP ordered another round of blood tests including some that were missing in the previous ones. Turns out his folic acid level had fallen off the cliff. Within days (literally) of folic acid treatment his memory was restored and over the next three months all the other symptoms gradually disappeared, though he had been ill for so long that it took him over a year to return to normal health.

Yet doctors only worry about folic acid it seems where pregnancy is concerned. They do not seem to appreciate how serious folic acid deficiency is as there is so little research done on it outside the pregnancy situation.

DH and I have wondered how many people with undiagnosed conditions have folic acid (or other deficiencies) that are never tested for.

Folic acid deficiency serious messes up every cell in the body because folate is essential for DNA synthesis, repair and methylation.

I don't want to derail this ME thread and apologies for being off-thread a little, but for anyone with bizarre, vague collection of undiagnosed symptoms I would seriously suggest you insist on a folic acid test in your blood tests.

[RockinD]

In February 2010 an endocrinologist told me I had CFS and a sleep disorder. He said that there was help available, but discharged me from his clinic, to which I had been referred as my GP thought there was an endocrine element to my symptoms (extreme fatigue, insomnia, muscle twitching, cold, thinning hair (everywhere), peeling fingernails and extreme muscle and joint pain).

This particular consultant told me before I even sat down that there was nothing hormonally wrong with me and was not prepared to acknowledge that NHS blood tests showed that I probably had a thyroid problem and that I definitely had a B12 deficiency and a ferritin deficiency. I then had a private thyroid screen carried out which showed quite clearly that I had a problem, so I sent the results to that consultant, along with the lab's quality assurance document, and asked him what he was going to do.

He referred me to a colleague and I have now been treated for the thyroid problem and the vitamin and mineral deficiencies. I am not completely fixed, but I would say I am 75/80% well and able to work full-time and have a social life, which had not been the case for some years before I started treatment.

In my case a diagnosis of CFS was definitely a cop out. The leaflet that the NHS hands out states that there is no definitive diagnostic test, no treatment, and an infinite variety of symptoms. Why should we accept a diagnosis on that basis?

D

[Saltire]

I ahve Fibromyalgia - at least thats the offical diagnosis.

Many pain clinic consultants since then ahve made it out to be somethign different

1 - "It's caused by migraines, as you ahve admitted that you suffer from migraines" - well that would work if I ahd migraine every day(which I don't) as I have pain every day
2- it's not Fibromyalgi, it's stress/depression
3 - We'll give you a very high does of amitryptiline and sleeping pills and you'll feel a lot better
4 - Lose all the excess weight and you will be pain free forever

I also know I am "lucky" with my Fibro as I don't have bad flare up pain all teh time, just what I call my "background pain". I also have long episodes of fatigue, such as snow, and then i'm fine. I ma now working part time though, as this time alst year I was doing 10 hour days and it nearly killed me.

Many people hav ethis thing that because I look ok, then I must be fine

[belleshell]

i have just spent the last 2 days in bed..... the only way i can explain how i feel is like a air bed where the pillow is still inflated and the bed as deflated.....from my head down i am deflated i have no energy the simplest things are difficult.... yet im not depressed, or lazy...I have ME! you cant see it but its there, i hate not been able to do things with my kids, make plans to go out with friends and dread anything that means im out of the house past 7pm at night...i want the active party goer men back and not this ME!

rant over...


can you explain how you feel...can you put it into words...i find it so hard to explain

[garlicbutter]

Leonie, my GP told me they can now prescribe melatonin in the UK - I asked. I use Zolpidem which works very well, so didn't bother switching. But I shall do if I develop resistance to the zolpidem. Had melatonin in hospital some years back; it's effective.

[Solo]

I stopped visiting the GP about my ME as I always think 'well, they can't do anything for me, so what's the point in going'. Sad really :(

[Nilgiri]

at the behaviour of your GP, Leonie. I'm so sorry you're going through this.

[LackaDAISYcal]

I'm also at you being asked to leave your GP surgery Leonie. My GP is brilliant and in fact it was him who was determined to get to the bottom of my symptoms.

Right, herbal tea and an early night beckon...rock and roll

[LackaDAISYcal]

Leonie, I have livedo on my upper arms and a patch on my stomach. I would definately recognise it from a photo as it's been the bane of my life for almost 10 years now. Mine are generally red and blotchy, but purple when cold. And it looks like perma-sunburn but is cold to the touch. I hate it :( especially as from May to October I fend off at least six comments daily about how I've "caught the sun"
Sun sensitivity is another typical loopy symptom and it can make other symptoms, like fatigue, much worse. I used to be such a sun worshipper too. These days I hide indoors or in the shade under a very large hat.

[ReallyTired]

LeonieDelt I am sorry to hear that you were kicked off a doctor's list for needing too much help. Had they offered you a secondary level referal for your symtoms. I really hope you made a formal complaint.

[nannipigg]

An ME specialist nurse???
I've luckily been handed over to a different Specialist that deals with both Immunology and ME .....STILL GOT NO ACTUAL DIAGNOSIS BUT AT LEAST HE ISN'T THINKING ABOUT DISCHARGING ME, like the last one!lol

[SerialKipper]

Who by, the milkman?! Bloody hell, that's shit nannipig.

[nannipigg]

I was told cos I can sleep okay sometimes I haven't got ME or CFS????

[Solo]

Oh let me join you on this thread! I too have had raised eyebrows and people telling me I should be 'over it by now!!' I'd love to 'be over it' I'd love my old life back ~ oh yes!! but 12 years on, I still fight every single day. Some days worse than others, but it never actually goes.
Lucky for me, my GP is very good, but there is another GP at the practice that told me 'I don't hold with that, I don't believe in it'

As for ATOS. Every time I've had to go to them, they make me feel very small, very beholden to them and like they hold my life in their hands.

[nannipigg]

At my worst with my reactions etc I was struggling on my todd, cos Hubby had moved away for work, with a 1 year old and waiting for gall bladder surgery. It's no fun....and no one at the Docs wanted to know that I was struggling to look after DD when I needed so much rest...

I am waiting for that talk with my docs too!
I was accused of wasting docs time a few months ago, cos I was constantly ill and in there. Now I have my new Consultant I don't bother, they are a waste of space really :-(