ME sufferer.. I have lost all my friends

[evaangel2]

Here goes,

I was diagnosed with Post Viral syndrome in Jan by my gp after a nasty flu or glandular fever (the test came back inconclusive for GF)
Anyhow I was forced to give up my job because I was not getting better and I decided to work from home...easier as if I needed to rest I could do it without any complications...

well anyhow my boss who was one of my closest friends wont speak to me anymore, I feel isolated, why are people so ignorant of ME...
just needed to offload

thanks

also two of my other closest friends are avoiding me ,, I think my ex boss has something to do with that

Hi evaangel, sorry to hear what you've been through. I don't know alot about ME, although I'm learning as MIl has it and so does the mum of one of dd2's friends.

All I can say reguards your old boss is that she isn't worth being friends with if she has just stopped talking to you like that and you deserve better.

Hello Evangel. ME is such a horible illness and I'm sorry you are having to deal with this. My brother has had ME for 11 years.

You are absolutely right about people not unerstanding the condition. People just dont seem to realise the kind of effort it takes for someone with ME to even speak at times. And because they don't understand they think that you are just not bothering to remain in touch. I think the problem is that the illness is still so misunderstood amongst the medical profession. Until it is more widely recognised and accepted, then I fear that people will remain ignorant to the sypmtoms and its effect on the life of people living with the condition.

I hope you find people that you can talk to and who understand without putting pressure on you. Pressure is exactly the thing you can do without!

Good luck. Always happy to lend a shoulder if you need to talk

Hi evaangel2, I'm really sorry to hear what you're going through. It is a real shame that there is such ignorance surrounding ME.
Have you heard of the foggy friends website? It's a busy site where ME sufferers can discuss anything at all really, it's full of info and great for support so if you haven't seen it yet it might be worth a look?
It's here
My son has ME, he's six next month, so most of the info I have relates to children but FF has all ages on there!

I hope things gets better for you.
x

Hello Eveangel2 - sorry to hear this - as parachutes says there is a vast amount of ignorance regarding ME. My DD (17) has had it for 2 years, missing the whole of her last statutory year of education. During that time, she also lost all her schoolfriends. People seem to think that you are "just tired" with ME and have no knowledge on all the other effects. You might like to send your friends this link which wasnt originally about ME but has been used to explain the difficulties ME sufferers have butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. At the end of the day, true friends will stick by you, rather than desert you when you need them most. Focus on the people who do care, rather than wasting negative energy on the others. I know this is easier said than done! Do try Foggy Friends, I am sure you will find other people in your position. Take care.

thanks all for your kind words, you are right there is such a vast amount of ignorance that surrounds ME...
Parachutes was it difficult to get a diagnosis for your son?
My gp recognised the post viral syndrome but just said i would improve in time and sent me for tests to eliminate other illness..it just stopped there...like the attitude "just get on with it" also persuaded me to take anti d but i stopped them after one month
thanks for the links it makes you feel that you are not the only one

chocoholic 73 you are right it isnt just about being tired I ache in my wrists and my fingers some days and at times I cant even think straight and hold a conversation

xx

Hi evaangel2, it took two years to get a diagnosis. Ds fell ill just before his third birthday and it was just before his fifth that we got the diagnosis: that was two GPs, three hospitals and four consultants later.
When we eventually got the diagnosis we felt it was more or less exactly what you said: get on with it now. The problem for children with M.E (and I only say it like that as I have no real experience with adults, perhaps it's the same?) is that from that point onwards there's no medical support as such only a constant pushing for them to get back to school and get on with it. I am trying very hard here not to rant

We moved and were extremely lucky to get a supportive GP. However that didn't really extend to anything other than just having a GP that actually believed ds was ill.
When ds first fell ill (and we realised that something serious was wrong) we visited a medical herbalist: Jo Dunbar, Botanica Medica and I believe she got him over that first, and worst, stage. She does telephone appointments and I would really recommend having a chat with them because she specialises in ME and really knows her stuff.

There are also many supplements that can help with the aches and pains; foggy friends has some info on there and it's also worth looking on the fibromyalgia sites for info on supplements/meds that can help with the pain. It's always worth making sure you're taking all the necessary vitamins and minerals (sorry, hope that doesn't preachy!) as that really helped ds a lot.
CoEnzyme Q10 is a supplement that also seems to help a great deal with energy levels, it certainly works for ds.

Sorry if the above's a bit long, am always happy to chat. Good luck.

Hey evaange2, so sorry to hea you have been diagnosed with ME, it's really debilitating. I second what parachutes has said - however, I wouldn't stop with a medical herbalist, I would get yourself to an experienced Naturopath who is also a herbalist as they will look for the triggers / root cause and treat from there.

You can self treat with every supplement under the sun but you could just be shooting in the dark.

A Naturopath will tailor make a treatment plan for you incorporating diet, send you for various tests (adrenal function, stool analysis etc) and go from there, as well as helping you understand what you need to do to get yourself better. Which you will !! We have great success in helping ME / Fibromyalgia / CFS sufferers. HTH

Hi evaangel2, I found an article I had that Jo Dunbar had written and I've copied that but re joint/muscle pain below:

"Herbstorelievemusclepain
Most of the patients I treat complain of pain in their muscles. M.E. is associated with fibromyalgia, which in turn may be linked to poor sleep.
However, if sleep improvement doesn't ease the muscle pain, I often suggest a magnesium citrate supplement, as several studies have shown M.E. patients to be magnesium deficient. I might also include anti-inflammatory herbs such as Frankincense (Boswellia serrata) or Tumeric (Cucuma longa) which cool inflammation and can reduce pain significantly.

Another cause of muscle pain may be poor circulation. Massage with rosemary and lavender essential oils is wonderful for stimulating circulation and helping to drain the lymph nodes, ideally aided by Ginkgo biloba, a well-known circulatory stimulant.

Ginger is another fabulous stimulant for poor circulation, with the added benefits of easing nausea, relieving joint pain (when combined with other
herbs) and improving the digestive process. This can be quite badly impaired in severe M.E., and may even require the temporary supplementation of digestive enzymes so that key nutrients aren't lost."

Hope it's of some interest.

Hey there evaange. First of all I'd like to say that I'm so glad you have a diagnosis. I've had ME for 3 years now, and I know how hard it can be.

I'm really lucky with where I am as I have a whole ME/CFS support team. My consultant immunologist (you should be able to get a referral to one no matter where you are in the country because of the government's new directives to do with the condition) is brilliant and I've had CBT and a OT to sort out the whole pacing thing, which for me has been key.

Current up-to-date research shows that its some kind of cell malfunction. I'm not sure what repercussions that will have on treatment procedures, but that particular malfunction does have a test, which can help with the 'it's all in your head' people - and I've come across my fair share of them!

If you want to keep in touch, that would be great, i know what it's like to need to have people around who understand. Take the best of care x