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ME/CFS advice

(11 Posts)
RustyPaperclip Sun 21-Feb-16 01:03:56

Hoping for some advice. I was ill for most of my childhood/teens and was eventually diagnosed with ME. However I felt that I was only diagnosed with ME because they ran out of other options, and I saw a lot of doctors who were extremely sceptical about the existence of ME. I was lucky to meet an amazing therapist who helped me with the use of CBT. I 'recovered' by about 16' however I regret that I have been quite dismissive of ME since then. I went through such a tough time trying to convince everyone that ME was real, I feel that I became accustomed to being made to feel like I was making it all up.

However I now been ill for the last 4 weeks with a terrible virus, and for the first time in over 10 years I feel like I did when I was diagnosed with ME. For example, I can't get out of bed, and I have no energy.

I really don't want it to seem like I am disbelieving anyone with ME, I just came up against so much disbelief that I convinced myself that it was depression or something else. I'm struggling to know whether this could be ME or just depression, like I was told by many doctors.

I am now really worried that I am getting ill again, and would be grateful for any advice.

gingerbiscuitandacuppatea Sun 21-Feb-16 20:18:56

Have you seen your gp and has blood tests, discussed it with them? Some viruses are hard to shift, or you may have vitamin deficiencies.

However, ME seems to be a condition that people never fully recover from. They may have remissions but will have relapses of symptoms again.

Rest, don't push yourself, and see what gp says

gingerbiscuitandacuppatea Sun 21-Feb-16 20:21:29

By the way, depression and ME may have slight overlaps, but ME has many immune and neurological symptoms that do not occur in depression. Have you looked at a comprehensive symptom list?

CFSKate Mon 22-Feb-16 19:57:22

4 weeks is not long when it comes to getting over a bad virus.

ME symptoms

RustyPaperclip Mon 22-Feb-16 20:18:29

I am aware that four weeks is not long. I suffered with ME for approximately 8 years before I got to the stage where I could cope. I also know the symtoms and that is what scares me. I have tried to avoid any news or research about ME because it was such a tough time, therefore I don't know what the current advice may be. I do know I have a Vitamin D deficiency, however my previous dr said this is very common.

Please don't get me wrong, I am very glad for all your advice, I just know that ME can be such a sensitive topic and I feel that I am a bit out of date on the research.

notagiraffe Mon 22-Feb-16 20:25:50

Vit D deficiency has a serious effect on fatigue. Just because it's common doesn't mean it's not really debilitating. I know of someone who ended up in a wheelchair with it and now cures it by going for a cheap beach holiday every October and February. Try to spend an hour in open air every day, facing the sun. You can also get Vit D drinks these days. And if you can afford the time and money go for a cheap holiday to the nearest sunny place and lie by the pool. Sounds like you need some proper recovery time for the post-viral symptoms anyway.

CFSKate Mon 22-Feb-16 20:30:34

Is it that you are not sure whether ME is the right diagnosis, or is it that you want to know current thinking and advice for ME?

Research that has been happening.

Norwegians are testing Rituximab. Two thirds of patients helped. Do a search for fluge mella rituximab to find out more.

Stanford looking at mitochondrial dysfunction.

notagiraffe Mon 22-Feb-16 20:30:44

Vit D deficiency has a serious effect on fatigue. Just because it's common doesn't mean it's not really debilitating. I know of someone who ended up in a wheelchair with it and now cures it by going for a cheap beach holiday every October and February. Try to spend an hour in open air every day, facing the sun. You can also get Vit D drinks these days. And if you can afford the time and money go for a cheap holiday to the nearest sunny place and lie by the pool. Sounds like you need some proper recovery time for the post-viral symptoms anyway.

RustyPaperclip Mon 22-Feb-16 20:33:11

Thank you so much for the advice notagiraffe. I felt much better when I started taking vitamin d supplements a few years ago, but now I am at a loss. I can completely understand how debilitating vitamin d deficiency can be. When I was ill as an early teen I saw a great dr who recommended going on a sunny holiday every winter. I will try my best to see what I can find.

I wasn't aware that I could get VIt D drinks, do you happen to know the name or where to buy them?!

I was also wondering if anyone had any experience of sun lamps. I know they were mentioned to me many years ago but I don't know how effective they are.

notagiraffe Mon 22-Feb-16 21:07:27

Sorry I don't know the drinks but have seen people drinking them and seen them in supermarkets and health food shops. They are usually in among the flavoured waters if that helps.

RustyPaperclip Mon 22-Feb-16 22:33:22

Thank you, that might help.there is a large chain near where I work so I will check there

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