CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Please consider signing the card for Dr Speight. He has done so much to help children with ME but now he has been blocked.

forum discussion

MEA statement

Sorry Kate, don't have the capacity to read much just now, can you give me a quick rundown on what's going on? Thanks.

Cries a bit

You ok Badders ☕️🍷🍰 on offer if you need it?

sweetkitty my GP said we'd need to try various medications to find the ones that work best as we all react differently and some will work better than others. She also said not to listen closely to others about their meds and what they think is brilliant, not because we shouldn't try those meds but because some medications work differently in different people due to our own genetics. That said, I use amitriptyline, cocodomol and gabapentin daily and Tramadol when I'm absolutely desperate (due to the side effects).

Well I have already had coffee and cake today so it is!!
There is another thread running atm 're the link between cfs and the gut...some of you may find it interesting?
I can't link, sorry. Ive never figured out how!
It states many people develop cfs after GF infection....certainly true for me!
Physio hurt
Ds2 got a little friend here for tea. Ds1 has an away football match.
I could cry I'm so tired.
Early night for me!!

AliceInUnderpants - about Dr Speight.
"Dr Nigel Speight has been a Consultant Paediatrician in Durham for over 25 years. He has seen a large number of cases of childhood ME in his own area and has frequently been called on to give a second opinion, often in very severe cases all over the country. He has played a major role in rescuing children from Care Proceedings, sadly a job which continues to this day."

So if the powers that be tried to take your child because they had ME, Dr Speight would help you. But now he has been blocked. He is still allowed to be a paediatrician, except for children with ME. The restrictions even extend to preventing him speaking or lecturing on the subject of ME. As well as this country he is no longer able to help the three families in Europe with legal proceedings.

So now those who say your child with ME has a psychiatric problem will have no opposition.

He has helped so much, also he is one of the contributors to the International Guidelines hence the card

What are the given reasons for him being 'banned'?

The GMC has not published the reasons for this decision.

www.mumsnet.com/Talk/in_the_news/2621752-IBS-ME-etc-and-the-gut?watched=1

Thanks Badders123 for mentioning this up-thread. Hope this link works...

Thanks also to CFSKate for continually adding new links to ME/CFS updates

Thanks to all those who have posted and sent on the odd occasion I have been well enough to post (tho' cannot recall which threads I actually made it on to!)

And big thanks to everyone who uses their spoons to keep posting so that the rest of us don't feel so alone. ME/CFS/Fibro is a cruel illness to happen to anyone and I am amazed, inspired and humbled by some of the every day challenges that some of you face. I cannot name you all, but I often answer telepathically when reading your posts. How am I doing?!

My post now looks like an Oscar's acceptance speech sorry.

for you all. We are survivors

I'll come back and talk about me another time. You know when you're just too weary of the whole thing...........

this makes for pretty grim reading on the subject. It's a transcript from a Panorama programme on treating ME in children, and Dr Speigt fighting against the admission of these children to a psychiatric ward, for what sounds like horrendous treatment that's done nothing to help them.

On a personal note, I'm feeling pretty awful. I don't know how much longer I can keep going with this bloody awful pain and fatigue. I can feel myself about to crash (this did happen once before), but I've only been diagnosed about 6mo ago and still trying to get to grips with fibro and how to manage it. I'm on amitriptyline, only 10mg, but I'm getting dizzy spells and not sure if I should increase the dose to help the fatigue or not. I'm not happy about being on codeine either (constipation a major factor here!) but I don't know what else the go wil do when I see him Friday. Is there anything else I can ask for/do myself? I'm struggling at work -
Pain fatigue and brain fog - and just going to bed early every night. Sorry for the me post. I just don't know how to proceed from here.

for everyone, hello to the newbies

ipswich how long have you been taking 10mg for? That is quite low.

You could ask about pain clinics.

Does anyone else have ultrasensitivity to the cold? I'm always cold, sometimes it gets so bad it hurts like all my muscles seize up, I think I may have Raynauds as well as my hands go white and cold then hurt and I have pins and needles when they warm up. To bed I wear fleecy jammie bottoms, a tshirt tucked in to avoid drafts, then a fleecy top, socks, a 15 tog duvet then a single duvet over my side. How we ever conceived 4DC I do not know?

My other weirdnesses are I hate strip lights they make me feel sick and give me headaches. And sunlight I always have to wear sunglasses in bright sunlight. Oh and noise hate loud noise which is difficult to avoid in this house. I thought these things were just me being me but now I can see they may be linked. Also have he usual pain which liked to move about today it's in my pelvis mostly and my knees. Fatigue and non restful sleep. Depression, anxiety, headaches and migraines.

Sorry that was a me post I know I'm not as ill as some on here don't know how you cope with years of feeling like this. Still trying to get my head around it, every morning it feels like I've done really strenuous new exercise the day before and had about 2 hours sleep

Living I've been taking it since diagnosis about 6mo ago. It does seem to help my sleep but I've been having some dizzy spells, and almost blacked out twice one night when I had to get up for the DC, so I'm reluctant to increase the dose without seeing my gp. I hadn't thought of the pain clinic, and I work around the corner from it! (brain fog!!)

sweet, I am light sensitive (strip lights and theatre lights are particularly bad), but in my case that's most likely due to complications with my RA. I do have circulation issues and am always cold, apart from the odd occasion where I'm overheating - I just burn up for no apparent reason. No happy medium for me!

Back again after a bad couple of days since joining. Intense pain yesterday in my leg muscles, haven't had anything like that in a while... Work was a bit of a challenge!

Daisy I can't lower the sertraline dose unfortunately, I find my situation too mentally difficult if I do. But I really appreciate your kind words

Living, Ipswich and others, can I ask what led to the prescription for amitriptyline (if that's not too personal)? My GP has mentioned long-term pain suppressants to me, but he doesn't think they're a good idea for me at the moment. Not sure if this is because he still thinks I need to 'toughen up' or because I've had problems with other long-term meds.

Kitty those sound like some pretty classic symptoms of all things spoony, though some more experienced posters might have more helpful things to say! Can I ask, do you burn badly in the sun? If so, I would check that your dr is also running a test for lupus.

No I love the sun only time I'm not cold. as long as I've got a hat and sunglasses on I'm fine I tan more than burn.

Morning
As predicted after physio yesterday I HURT
But
It's sunny outside and unlike yesterday I don't have loads of errands to do so might just potter about until it's time to go to work
Only 3 more sleeps til dh is back!!!

sweetkitty here's what I know about those symptoms in ME. (Although it could be something else)

typical very severe ME patient has a blindfold, blackout curtains and ear thingies to block out noise. like this scroll down for photo

"inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception"

It does also mention cold extremities and something about Raynauds. My hands don't go white like you describe though. But I do have trouble with temperature extremes, most ME people do. If you go through the guidelines using CTRL F for temperature , there's several mentions.

ginny the pain clinic gave me it when I was struggling with TMJ problems in 2003. Was diagnosed with fibro 2 years (I think) later. They tried a few different things but it was the one that helped the most so I stuck with it. Saying that, in 1999 my old GP gave it me for headaches before switching me to an SSRI. Completely forgot about that until just now! Wish I'd stayed on it then.

Ipswich you could try a different medication, I don't think everyone gets on with it. Dosulepin made me much less zombie like.

sweet yes I'm always cold, although if I have to stand up for a while I end up a sweaty mess (but not actually hot) for some reason. Also boiling during the night quite often. I have bad raynauds but since they warned me my fingers could end up black I've been extra careful so will act the minute I see a hint of blue!

I can't cope with any lights other than the old incandescent light bulbs (which aren't that easy to come by now so I'm testing out very low watt LED bulbs) and I hate the sun (makes me feel exhausted, I burn & my headaches are worse). I definitely don't have lupus though, I've been tested for it loads. It's fibro with rosacea.

I'm ALWAYS cold

I'm always cold too and have been told I have Reynolds but, I will say I don't have it as bad as a friend of mine who has a treatment every year (has to be done in hospital via a drip over so many hours... can't remember the name of the drug). That isn't to say I don't find it painful. My hands go red, white then red, I haven't.. yet, had blue fingers or toes. I'm with you sweetkitty on the amazement of having kids with the number of layers needed in bed... but I have found a heated mattress pad (lidl sell them towards the end of the year) has helped hugely. Although I'm always cold, I can't cope with heat either - direct heat to my back for example is ok but a hot room makes me feel very sick...

I am sensitive to light but find low light conditions (not dark but murky) harder to see in and I find driving at night virtually impossible with the flashes of car headlights.

Amitryptiline - I've been on 10mg for about 6-12 months now, prior to that I was on just 5mg for about 4-5yrs I'm very sensitive to the effects of medications and even 5mg left me feeling like a hungover zombie! It's only in the last 6-12 months that I've found it easier to deal with or become accustomed to the side effects that I've been able to take 10mg. My GP recommended taking it because a) it helps with sleep and b) it's proven to help with nerve pain. ipswich my GP is happy for me to adjust the dose to see how I go - within reason, she wouldn't expect me to suddenly take 3 tablets but 5mg is ok - you could try increasing by 1/2 a tablet but.. it might make you feel more fatigued - all depends how it affects you. If I miss a tablet I know that night I've missed it but some people take longer to feel the effects..

daisy yes they offered me that raynaulds treatment but I turned it down. Wasn't keen on the side effects.

Re dosage - I've been on 150mg for... 11 years.. Something like that

Also always cold! Except when I'm inexplicably hot when other people are wrapped up in sweaters.

Also probably have Raynaud's, but not very extreme. Mostly it's been my feet going numb on me, and it seems trying to keep them warm and not constricted (e.g., going sockless at home in big loose, warm slippers) at other times helps. My hands occasionally develop the pattern, and I also have random tingling and numbness, but some of that may be more related to POTS and the small fiber neuropathy that often goes along with that (although no one's diagnosed it, that's just my guess). GP said he could provide Raynauds treatments, but as they are often counter to POTS treatments, I'd rather not use them unless it becomes a severe problem.

And thanks for the link the news thread. Found the '8 best foods' thing interesting - I may try some of them. I already try to eat dark chocolate each day, on the recommendation of my CFS/ME nurse. He said the study used 40g a day (although I see it was actually 45g - close!) but I only usually manage 20g as chocolate is a migraine trigger for me so I have to be very careful. But 20g seems okay.

I just did a bit of research and found info about the chocolate study:

Press release
Actual article (open access)

It was done back in 2010, but I can't seem to find much follow-up at all. I suppose it is a tiny thing, particularly on 10 people only! So either no one followed it up or no one was able to replicate it. I'd love to know which.

Haven't caught up on the thread yet. This week is being challenging to say the least.

Been for my echocardiogram this morning. I am very large chested, which made it more difficult for them and now feel incredibly bruised. It's going to take 3 weeks for the results to reach my cardiologist.