Andover Fibromyalgia & ME Community Group
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Help, advice or support needed for CFS/Fibromyalgia

Hi all, I'm Jay and I am new to this site. I was diagnosed with CFS over 10 years ago and Fibromyalgia over 2 years ago. I have changed my career and lifestyle to ensure I can work full-time. I was always proud of the fact that I never had time off because of my conditions. I always thought I managed them well. Over the past 4 months things have deteriorated immensely for me and I am currently signed off work because of the pain and not coping.

The pains became unbearable and I was anxious, stressed, depressed, brain fog, unsteady on my feet at times and not sleeping. I now struggle with constipation, take codeine (60mg 4 times a day, 1000mg paracetamol 4 times a day, lactulose, Doxycycline 90mg, have low iron and low folic acid. My BP is generally 96/65. I have stiff joints, swollen knuckles, headaches and when I do nothing for days I start to feel better, then when I start to add small activity into my day I am exhausted and in pain. I have very low self-esteem and confidence and hurt myself as I feel so low. I see an health trainer which helps and gives me the opportunity to talk about things.

I have previously had cameras up and down. I had a full hysterectomy in Feb this year due to ongoing issues and cysts on my ovaries. I have had cysts in my breasts and had one of these drained. I have previously had multiple operations to drain and remove abscesses. I am a 45 years old female who use to love sports and being active and it upsets me that I can no longer do this.

I see my doctor regularly.

Anyone to talk to or any advice would be appreciated. Thank you.

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Hi doryjay, sorry to read how ill you’ve been and how hard things are. Hmmm, advice, unsure. I’ve been diagnosed with fibro for 2 yrs but think I’ve had it nearer 5.

It’s really really hard to stay positive when in pain every day isn’t it. As frustrating as it is, if you need to stay in bed then do. Try to be easy on yourself, if you can’t do something tell yourself it’s just not the right time at the moment.

If youre having to write off the day in bed then try and drink plenty of water. Do you take any supplements? Maybe on the days you can’t do anything if you could manage water and supplements that would be a start? A.

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Hi,thanks for your response, I take iron,folic acid and magnesium. I never spend the day in bed, I just can't do that. I fight myself all the time which makes me worse I know, but my anxiety is getting worse which then exasperates all my symptoms! Feel like a right wreck at the moment! How do you manage the pain? Do you feel low often?

Jay

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Hi sorry to hear that at present you don't feel that there is a light at the end of your tunnel. I like you and Im sure many other fellow sufferers feel the the same. All of us experience some if not all the symptoms you describe and each of us will try anything to help ease the pain and discomfort. I use a duvet on the top of mattress to ease pain from tender joints at night. One thing ,I have joined the gym just for swimming I have found that being in water helps to relax the muscules I don't swim much but use the water for gentle excercises, I was amazed at how many others like me went,there's always someone there with similar problems and it's nice to listen and talk with them,it takes your mind off it for a short while. I have been on predisilone for 15months starting off on a high dose reduced to a small dose over the months,it has helped me not as stiff in a morning the pains still there but is more bearable. I feel that you need to do what you feel like if your tired rest if not so tired just a little making sure that you do not overdo it.take care pollyperks

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Welcome to the AFMCG Community Doryjay ! :)

Sorry to hear that you are finding it more difficult recently to cope with the symptoms of Fibro & ME. I understand having both conditions myself and totally empathise with you.

The first thing that came to my mind was Postural Orthostatic Tachycardia Syndrome (POTS) as you mention dizziness and low BP. However I am not a DR but it might be something worth reading about and then mentioning to your GP if you feel it fits your symptoms, see link below;

nhs.uk/conditions/postural-...

Many people with our conditions have POTS (as a form of dysautonomia) (including the lady Jennifer Brea who has recently been trying to raise awareness of ME with her film Unrest. If you haven't seen it you may like to, however it is very emotional to watch as it shows the reality of living with ME. Hopefully it will raise awareness within the general public and the government will realise what we go through 24/7.

I wondered if I could draw your attention to a post entitled 'How do I lock posts so only members of this community can read them?' as I see this post is not locked. All the information you need should you wish to lock it can be found in the post below;

healthunlocked.com/afmcguk/...

We are happy to listen and talk if this helps support you at this present time :)

All the best

Emma :)

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