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Author Topic: Newbie in Bath  (Read 509 times)
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« on: April 16, 2017, 11:02:01 AM »

Hi all,  sign0144

Very new to the whole idea that I might have CFS, but already seeing what a frustrating condition it is to deal with.  bang head I've an appointment with rheumatology soon for a possible diagnosis of fibromyalgia (after a year of thinking my symptoms were the menopause). Fibro seemed to fit my symptoms perfectly until March when, after struggling on at work through very physical jobs I felt I couldn't do (but without a "condition" I could not be excused from) I suddenly felt a shift into what I now see as CFS. A few months ago, the pain would come and go and sometimes I'd feel fine. Now I've felt completely exhausted for a month and even driving the car makes my wrists / arms / shoulders hurt enough to keep me awake at night.

I expect it'll be easier to get a diagnosis for fibro than for CFS, and at least that will help a little in communicating with my employer, but I'm anticipating figuring things out myself with the help of forums like this.

Signed off work at the moment on the basis of pain, but wondering how to explain that it's no longer all about the pain...I'm exhausted!
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After 12 years of trying, I'm now A OK

« Reply #1 on: April 16, 2017, 11:35:52 AM »

Hi BathJan, and welcome to the forum.

I don't know if you're aware or not, but CFS is an illness of exclusion - ie.. all other likely possibilities have to be excluded via tests before the CFS diagnosis is given. The tests the rhuematologist will do are a good start, but it's good to push your GP for all other useful tests.

I hope you get something useful from your time here, and I'm sure you will. If you have any questions, please ask them - we're friendly  smile


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« Reply #2 on: April 17, 2017, 11:00:27 AM »

Hello there Bathjan - and welcome to the forum!

I was interested to note that your problems began during the menopause as so did mine. I am now 64 and my last period was at 49 and my condition developed very slowly and so like you I put it down to the menopause....for years!

I feel I have had to do much of my own research in this, and that help in mainstream medicine is very limited. You might be interested to know that there was a Dr (Dr John Lowe) in the US who treated people with fibro with thyroid drugs, although he was a maverick and it was not approved of, nor would be now. However he helped to make many of them well. Sadly he died in a tragic accident a few years ago, but many of his records still exist online in various places.

I only throw that out because I am still working away on my own research and thoughts on my condition, and as I was already diagnosed with underactive thyroid long before I got the CFS diagnosis, I have something to work with. I was already taking Thyroxine, (T4) the normal replacement therapy given and I noted that it didn't totally work for me and I ended up with muscle pain if I exercised. Eventually I changed to Liothyronine (T3) with the help of my Dr, and now I rarely get muscle pain. That's a whole can of worms though as the Govt want to stop funding T3 due to the expense.

The other thing that I have recently started taking is Progesterone as it was clear to me that I had some kind of cortisol issue which was adding to my problems. Interestingly the progesterone appears to be sorting out my long lived migraines which began after the menopause (having tried all other approaches).

I am not keen on pharmaceuticals, and we all have to make our own choices. I have to take thyroid medication as a replacement, so I don't look at that in the same way. Anyway, it may give you something to think of if you want to look further. Some people have blood tests done on their sex hormones (I am not sure what is available on that mainstream) and my view is that if something changes drastically in menopause then it must be due to some of the hormones involved in that. Putting that right may be tricky but you may be able to find someone to help with that (maybe not free though and on the NHS).

Have you had basic blood tests done by the GP incidentally and accessed those results yourself (eg B12, ferritin, folate, vit D)? Often they will test and say 'fine' but you may be at the bottom of the range. Also thyroid function test too. It's always good practice to get hold of the results on paper so you can see where you are in the range. You may be at the bottom and then this could be optimised with supplements.

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