Advice RE CFS Please....?

Should also mention that I don't believe it is fibromyalgia as I am no longer tender to touch any part of where the typical areas are shown.

Hi Paul

my husband started with similar symptoms to you. 

Headache tiredness aches and pains . His ibs went mad and he got gastritus he had an endoscopy . He had psoriasis too ... 

He also is laid back but if you are laid back the stress you are absorbing comes out physically .. Ask if you can have occupational therapists that deal with CFS visit you. You will find them a wealth of info. They explain to you how to pace yourself out of it. And give practical help like no caffeine , how to sleep better etc ... Most important how to relax... Relax as switch brain off... Not playing computer watching TV is not switching off. Shutting your eyes and listening to relaxing music is. Or wave music etc... 

You sound anxious about your health. Which is understandable . Do get everything checked as you can have CFS and other things ... 

Hope this helps

Thanks for the quick reply Sally, much appreciated.  As I say I have been tested for literally everything, had so much blood taken, even blood cultures etc, everything is fine apparently, just these symptoms as above remain and just a bit concerned that I'm going to be the same in 6 months time and it turns out it's something minor like an allergy etc.  Is your husband better now?  I sleep very well, if I go to bed at 10.30pm I wake up at 7am having slept straight through, however most days when I wake up I have palpitations before I am even conscious really...

Ny husband is getting better but is not good. He fought it for 3 years working pushing himself etc and has ended up unable to work at all . But he is beginning to pull out of it . But something has pushed your body into melt down. The CFS specialist said virus and stress and health issues all start or pinpoint the beginning of this illness. From a car crash, open heart surgery , being unfairly sacked, bereavement , etc etc.. And a virus and being a person who pushes there body ... Interesting .. So keep checking your symptoms out but you sound like you have typical CFS. But you could have CFS and an allergy too .. Check out palpitations and the vagus nerve very interesting has a link with stomach too ..all stress related ..

Hi Paul, Probably silly question as you've mentioned you've had lots of blood tests but have they looked closely at  your thyroid? There are various thyroid tests and your symptoms sound very similar. That said, CFS can mimic many things. JK

....also.....I know that particularly your symptoms of palpatations and lump in throat are very typical of a thyroid issue. The aching \round knees and neck are also typical lymph areas that can swell/ache due to enlargement of the nodes because of an immune issue...possible viral etc etc.  Its a minefield.....I've got CFS/ME/Fibro and have had symptoms for over 4 years but only diagnosed last summer after a huge range of tests. JK

Hey Paul,

I'm 31/m and the same stuff almost exactly, except I had glandular fever last Sept 2013 that started it all. I never recovered but got vaguely better by March 2014 when I had a vaccination for hepititis due to the fact I'm a gardener. Within days I absolutely crashed and began slowly improving up until 3weels ago. These improvements have, at best, left me feeling maybe 60%.

Right now I'm off work again. See if you recognise this: tension headaches, sore cheeks, aches down the back of the neck, shakes, and internal tremors, aches and weakness, lots of yawning, dizziness, brain fog, irritability, and most recently - I wake up feeling sick. 

I'm waiting on a hospital appointment, I love in NZ you see - I think they're slower than UK.

Hey, Paul. Sorry you're having all these symptoms. I assume you've excluded other illnesses through testing. I definitely have some of your symptoms with "my" CFS/ME. Food sensitivities are very common. My nose would start running when I ate certain foods. After putting me on a very limited diet for 2 weeks, my nutritionist put me on a 4-day rotation diet. That is, I couldn't eat the same foods for four consecutive days. This helped me greatly. I've seen this kind of diet recommended a lot. Even if you don't have food issues, it's a healthy way to eat. Headaches,and muscle aches and pains, are very common with CFS/ME. I also had episodes of rapid heartbeat, which was totally remedied by taking 25 mg of Lopressor (a beta blocker) twice per day. I doubt your rapid heartbeat is caused by anxiety. This problem is not uncommon with people who have CFS/ME. I also have difficulty sleeping, numbness, weakness, and tingling, as well as electric pains in my limbs. Periodically, I get a sore throat or feel nauseous, both common with this illness. I also get brain fog and have short-term memory loss. Geez. Looking at this list of symptoms, I'm a mess! I try to stay sane through meditation and mindfulness. One day at a time. It can be very difficult. One good day a week is a good thing. Pacing yourself is very important.    

Hi Paul

Sorry to read how poorly you are feeling and that you don't seem to have been given any advice or guidance on how to manage your condition.  Your symptoms are very similar to those of my daughter, 20 in August.  She began to become poorly at 13 and was misdiagnosed - by a Paediatrician - until we moved to a different county when she was 17.  Like you, she doesn't sleep 'all the time' and is so healthy in every other way she couldn't answer the question, 'does it feel like flu?'  After so many blood tests she has become averse to needles coming anywhere near her.

Sally's reply looks good; I wish we'd had anyone from health visit my daughter.  We did ask . . . all we got back was how to complain?!  So, privately, we did the research and found a therapeutic yoga teacher.  Also tried Mickle therapy.  My daughter was too young to benefit from Mickle Therapy but for an adult, who has had some life of their own, I think it would be very well worth the effort.  The yoga teacher comes to our flat and this treatment has definitely helped.  Definitely.  It has taught how to relax the mind and a subsequent easing of pain in the body to a more bearable level follows.

The other help is to stop thining about the symptoms and focus on what is well - which is how Mickle Therapy works, I think, but my daughter had to find her own way there as the therapist in our area was unable to relate to a young woman who had only known how to be timetabled for school and been too poorly to have a life beyond working for exams.

This will probably not be what you are hoping to read; the first year of a proper diagnosis was tough.  This is a life changing condition which challenges so many of our cultural values - especially the work ethic - it takes a lot of adjustment.  The only proper cure, so far, is rest.  There is no prognosis so planning for recovery is just another form of stress which isn't worth the pain and sense of failure.

The advice from the others here on pacing, from my point of view as someone on the outside, is critical.  The one good day a week you describe is very good.  You might pace that out so that you feel well for part of every day . . . it's life changing and it doesn't kill anyone.  In other words, you will live with it and while there is no other treatment the ultimate question is how to pass the time when you can't work.  I hope you have someone close who can support you with the changes.  Emotional strain is the most tiring of all activity for my daughter and worrying (about money, friendships, career prospects etc etc etc) is totally counter productive to any kind of recovery.

Sarah

Hey Paul,

me again.  I just wanted to add a bit on diet - lots of fresh foods, home cooking, no meat but plenty of other protein, yogourt daily.

:-)

 

This all sounds very familiar I'm afraid. I had all kinds of wierd digestive stuff and relentless headaches. Good diet is vital and I had to cut out all the booze and fags. I found that Samatha meditation helped. I found this more appropriate than mindfullness/vipassana as this can be a bit challenging as you progress. Not neccessaryily a bad thing but you need to be aware that it can be a "ride." Samatha is always focused on the warm n fuzzy.

Cfs is a symptom, not a diagnosis. Just like fibromyalgia, there's always something underlying as these are symptoms. If you have cfs, there is something going on. For me (I have this also) I searched for 18 months before finding out it is Lyme disease. I know this is an older thread, hope you found the answer, but I would definitely get tested for Lyme if you haven't already. This sounds like the culprit underlying your symptoms.