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Please can people give me the benefit of their experience and knowledge on my chronic fatigue? I don’t fit the ‘model’ definitions of CMS/ME, my research has been inconclusive and I now feel overwhelmed.
By nature, I like to get on and sort things out myself, but I feel like a drowning man swimming back to the beach against a fast current; no matter how much progress I think I make, I always seem further away and more tired.
· I’m a man in my late 50s. Although personality tests and experience show that I might be slightly unstable/neurotic, for 30 years I had 2 very successful careers in demanding jobs.
· A few years ago I began to feel a little depressed with divorce and work pressures; anti-depressants (Prozac, Venlafaxine then Imipramine) helped for a while. Then one day I’d had enough; the pressures of an increasingly-difficult post-divorce life and a challenging new boss combined with my feeling increasingly fatigued and disorientated led to my effectively hiding in a corner of the room both physically and mentally. Since then I’ve struggled to recover, despite my not having many pressures (my personal life has improved, I don’t work and I don’t claim benefits as I had a big enough payout/pension to retire early).
· I suppose I felt from an early age that I’ve needed my sleep and often took naps at lunch time, but this was absolutely nothing compared to what I have to deal with now.
· I feel permanently tired as if I have a lead cape over my body, eyes and brain. I have to lift that lead to do anything and I quickly become frustrated and even more tired. Neither sleep, rest nor ignoring the lead makes any difference. Some days I feel completely wiped out; on other days I can exercise reasonable well, for example jogging/walking 3 miles.
· At around the same time as my breakdown I got noticeable Tinnitus and a very slight tingling in my hands. Shortly afterwards I had a debilitating pain from the site of nose surgery 20 years ago, a mild form of Empty Nose Syndrome.
· Since then I have developed Restless Legs, a general uncomfortable feeling in my muscles, pain from old injuries (no significant muscle aches though), frequent calf muscle cramps, had a recurrent dry cough and, starting during a cold some 4 months ago, an intermittent feeling of suffocating that I think is allied to feeling trapped by the other symptoms.
· I also get ‘brain fog’, for example thinking through treacle when working out why I was in Sainsbury’s and not being able to remember my mother’s name yet 5 minutes later easily doing a difficult crossword.
· I still get depressed, but IMO that stems entirely from everything being a struggle and my feeling uncomfortable rather than any innate depression. Mainly, I’m just tired of it all to the extent that I’d be more relieved than upset if a meteorite were to fall on my head.
· My GP has found nothing physically wrong with me.
· I accept that much of my issues might be psychosomatic, but I see nothing for me to gain from being ill and I see myself as positive, determined and pragmatic rather than dependent and idealistic. I saw a consultant psychiatrist who said that changing drugs won’t help but psychotherapy might; I’ve not seen a psychotherapist as talking doesn’t seem to work for me and the effort of arranging something and going is just too much (that my GP says I won’t get anything on the NHS doesn’t help either).
· Blood tests show nothing significant, just slightly low B12 levels and less-than-ideal-but-well-within-NHS-limits Thyroid levels.
· I tried supplementing B12 but a possible interaction with the side effects of reducing my other drugs led me to stop. I intend to try again later.
· I started 3 weeks ago to supplement with Thyroid S. I’ve not noticed any difference, albeit I’m starting off slowly and I’ve read it can take a long time to have an effect.
· A study showed that I had slight sleep Apnea and a CPAP machine helps.
· I take Provigil. This helps, improving matters from a ‘very difficult to do anything’ to a ‘difficult to do anything’.
· After reading that fatigue was a potential side effect of my nose medication (Imipramine and Gabapentin), I reduced then stopped my doses, albeit with a few challenges over possible withdrawal symptoms. I’ve noticed no change in my fatigue.
· Trying ‘just rest’ and ‘put it all out of your mind and throw yourself into projects’ approaches have produced no improvements, just more frustration.
· I’ve read this self-help book and that self-help book but nothing seems to stick or work.
0 likes, 12 replies
No probs with Bp but heart rate is ok but it does go "thump thump - pause"
and I get really col and clammy
no worse symptoms when I stand but at the moment i could fall asleep standing up
Thank you for your reply
end of February 2017 just in bed for days upon days
for 2/3 months no energy no nothing
thanks for replying
Your symptoms are similar to CFS/ME, but almost seem more like Fibromyalgia. If you can walk or run 3 miles, you could still have a mild case of CFS. Also there seems to be a slight difference between CFS & ME, in which case you symptoms are more like ME.
You have to learn how to pace yourself, otherwise on your good days you will cause yourself to relapse...
Stress is your enemy, it can cause a relapse. That is physical or mental stress, both can wipe you out.
There are a variety of supplements to try, but you have to see what works for you. B12 is best in a sublingual form.
Also CFS sufferers often need vitamin D.
Probiotics may help since there seems to be a 'gut' issue with CFS.
I also take magnesium & potassium for leg cramps.
Everyone has to experiment to see what works for them, mild exercise if you are up to it. Research CFS/ME learn what others are doing & what works for them.
HealthRising & PhoenixRising are good forums with many resources. There are many others....
There is also a video by Jen Brea on Ted talk, that is worth watching.
I hope some of this helps you.
You have a lot of ongoing issues
I have just joined this forum and am not a doctor
but over 20 years or so have various troubles - mentally & physically
Me - i would get a piece of paper and write down the most troubling issue you have followed by the next and so on
I had to see my doctor for 3/4 problems i was going through
& and being impatient I wanted answers
i had to wait and take into account the problems that affected me the most
and deal with it
Hard work but in time things got better
you must - I think try and address each symptom with your doctor
Is it CFS -I dont know - but for me you have so many health issues
and nowhere to go
so just hope a friendly message has helped
Some if not all of your symptoms could be caused by a condition that I recently got diagnosed with. I've had CFS for the past 25 years and then recently began having the brain fog, memory problems, body aches, and leg pain that you're describing. It turns out I had Left Iliac Vein Compression Syndrome (May-Thurner Syndrome Without Blood Clots or DVTs. After I got diagnosed I read a vein clinic website that listed symptoms of MTS:
Then at around 70% or more compression of the Left Iliac Vein can cause Leg Pain or Swelling, Pelvic Pain, Pain w/Intercourse (Dyspareunia), Pelvic Pain after Intercourse (Post-Coital Pain), Lower Back Pain, or Urinary Bladder Discomfort. This described almost exactly all of the symptoms I had been having.
A simple stenting procedure cured every problem including the CFS almost overnight. Just a suggestion since I know almost no doctors know the problem this condition can cause.
I did have a response, but now I have a question...
Does anything ever get moderated or is it just ignored.
I mentioned other forums & a recent popular video as suggestions for StrivingOn.
This is the second time what I posted was moderated, I don't think I ever saw my first post, I checked for days & it never was shown. Someone actually posted the link to the video, not sure how that happened...
Just a bit disappointed with this forum, I haven't posted anything inappropriate or spamming..
Afraid of forum competition?
Just really strange...
Anyway my advice was to pace yourself StrivingOn,
and to avoid stress. It is easy to overdo when you feel better, but it is best to pace yourself. Stress can cause a relapse too, so try to avoid stress whenever possible.
Also, sublingual vitamin B12 is best.
Thank you. Having comments deleted/moderated isn't personal, I've seen it many times; the site has to protect itself and Mods can be tough in applying the forum rules. It's a pain and frustrating, but done with the best of intentions I'm sure.
Now, if there was a way to pm me . . .
Thank you all.
Unfortunately, no sooner had I put up my thread than I came down with a nasty cold. I'm getting better, albeit still beyond little more than lying in bed, so please excuse me for being slow to respond.
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