hello possible ME sufferer. Any opinions appreciat

[rm1]

I will keep this short. I have been ill for 16 months following a sudden flu like onset I ran a fever for eight weeks and was very ill and off work for two months. I returned to work and am better than initially but still suffer daily with aching calves,headaches including an unpleasant tightness across my forehead and temples. I also suffer fatigue unrestful sleep and general malaise and am less intellectually sharp than previously, I am much more anxious too. Although I am better than I was I vary from day to day week to week and any improvement is so slow as to be only perceptible with hindsight.
The only odd thing is i generally feel better when out walking my dog and don't seem to suffer adversely from exercise. This lead one doctor to propose that i may be suffering from chronic hyperventilation syndrome.
Anyway what do you guys think should I be pushing to see an ME specialist? currently the GP has sent me away as he can't think of anything else to do.
Thanks in advance for any replies.

[JR]

I'm not an expert, so don't pay too much attention to me, but if exercise isn't knocking you over, I wouldn't have thought it was PVF? Have you considered whether it's a delayed response to your exercise, rather than right afterwards? Try keeping a diary of what you eat, what exercise you do and when you feel the effects.

[rm1]

yes the excercise thing is what has stopped me from self diagnosing pvfs much earlier but i am negative on all tests and have the other symptoms i am fatigued but I actually feel better when walking so i have continued it plus I have a dog and he needs walking. I have been out walking everyday of my illness, as for how i feel; I feel best during excercise and worse the rest of the time I feel poor to terrible all the time although better than when I was first struck down. i went gluten and dairy free for four months and that made no difference; now i et healthily but not obsessively so any further tips would be appreciated.

[isis25]

Hey rm1, welcome to the forum!

You say you feel good during exercise but worse at any other time! With M.E. fatigue and symptoms arising from over activity can occur any time within 72 hours. So I would keep a diary as this could be having an adverse effect on you. Unfortunately CFS is only a diagnosis of exclusion, so print off the NHS guidelines for CFS and take it to your GP along with a diary about what you've done and how you feel. Remember activity can be anything from caring for yourself, to housework to physical exercise. CFS/ME can affect sufferers in many different ways and lets face it its not normal to be fatigued for 16 months. Don't be fobbed off by your GP just because they can't think of anything else to do! Has he tested your adrenal function, thyroid, T3 & T4, coleiac disease, Addisons disease, auto immune (lupus etc). Turn it back to them and ask for a referral to exclude all possibilites!

Ang
x


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I won't let ME/CFS and Fibromyalgia rule my life, I'll just adjust it accordingly!

[rm1]

cheers i am going to my GP next week and will push for a diagnosis and more tests if appropriate.
Actually the GP has been saying he thinks it's PVFS for a long time though a rheumatology consultant (i was referred owing to leg pain) said he though it was chronic hyperventilation. Which i think was a red herring and which has slowed down my diagnosis.

[Luci]

Hey RM1,

I have been diagnosed with CFS/ME for around 9 months now, and find the same thing as you, I tend to feel better whilst walking my dog too! Perhaps this is a little bit to do with endorphine release? I find that whilst an increase in activity can sometimes make me feel worse (usually 72 hours later) I seem to cope much better with physical activity than stress, which is usually the cause for any relapses I have.
Hop you get referred to a specialist who can help you further. I found that the CFS team I was sent to helped me alot.

Best of luck!

[rm1]

Hi Luci, what you say exactly parrallels my experience if i do feel worse after excercise it is usually a couple of days later. Also i too have found stress the really big downer and i think one of the main reasons it all started in the first place. Best wishes.

[Fizzy]

Hi RM1. My PV symptoms began acutely and severely two years ago next month. Like you, I had fever (full-blown rigors) for eight weeks and I was rushed to A&E on three occasons. As soon as I could get around without passing out, I began walking our dogs. Walking helped me to re-build my stamina, it helped me to cope with the waves of panic caused by my body's hyper-sensitivity, it stopped me from focusing on my symptoms, it helped me clear my mind and generally preserved my sanity. At first, when I was still very weak and shakey, I'd sleep after a walk but once I recovered from my initial virus-related infection, I didn't need to sleep or rest following exercise. However, I always had to ensure that I went..and have to ensure that I go to bed at a reasonable time. My remaining symptoms are very mild but my body simply can't cope with late nights. Also, I don't cope with stress as well as I used to but I'm working on the hope that that, too, will right its self in the end.

I wish you all well and hope your individual recoveries will be sooner rather than later.

<img src="images/smilies/smile.gif" border=0 />

[rm1]

hi fizzy thanks for your encouraging post How did your recovery progress? consistently or with relapses?

[Fizzy]

A bit of both. My overall progress has been consistent (slow and steady) but with regular ups and downs along the way; the latter diminishing in severity and frequency, over time. Slowly seems to be the operative term, doesn't it! <img src="images/smilies/biggrin.gif" border="0" alt="Big Grin" />
<em>edited by Fizzy on 1/17/2012</em>