CFS in every day living

[Trulysad-76]

Hello I am new to your community and hope you are all ok? I was diagnosed with CFS 3 years a go, it has caused me quite a lot of different problems. Fatigue, pain and aches, sickness and lack of sleep. I went to a specialist hospital in Sutton, they were amazing and can go back when ever I like. They offered me group meetings, physiotherapy, water therapy and one on one appointments. The most valuable thing I learnt at this hospital is the B12 overload vitamin. Not every doctor will let you have the B12 vitamin injections so you have to get the vitamins yourself.

I will however say that although I have been managing my CFS it does debilitate me. I do have other problems such as Raynaud's disease and some sort of degenerative disc disease in my neck and just had injections in my shoulder yesterday.

How would one know if they either have fibromyalgia? I am currently doing a lot of research as I still feel something else is going on. This may be in my head but have been told it may be functional? What ever does that mean even. Anyway I appreciate all input from you and hope you can help

[Hidden]

Hi and welcome.

I'm in a similar boat - as much as I am managing things better it still is very debilitating and have other complicating health factors including pain.

In the early days I seen a specialist and he advised gluten and diary free and that seemed to ease a lot of aches and pains quite quickly although I still have my usual pains!

Might be worth looking into diet including VIt D3

Take care.

[Ravensleigh in reply to Hidden]

There definitely seems to be a link with the gut systems bbc.co.uk/programmes/articl... diet variations help lots of interesting research mainly in the US and Australia so unlike a few years ago there is some hope for ME sufferers have you joined the meassociation.org.uk/ ?

[Trulysad-76 in reply to Ravensleigh]

Thank you so much for your input, I will have a look at the links you have given tomorrow

[Hidden in reply to Ravensleigh]

Thanks for the info, will take a look. No not a member of anywhere other than here, must take a look, ta.

[MRSME in reply to Ravensleigh]

I was dxed with me/cfs in 2014 and now i been dxed with Hashimoto's so have to learn how to eat cutting out gluten, i have brought some free from crunchy nut corn flakes and i can honestly say the are delicious, better then kelloggs, i am also using gluten free bread for sandwiches and this is going well, my gut likes it. x

[peege in reply to Ravensleigh]

Thank you Ravensleigh for those link. Really, really useful.

I've just joined, yet to post. P

[Golfer15]

Hi, I have been diagnosed with Fibromyalgia but I think I have CFS aswell. The two things seem very linked. I am seeing my GP next week as I want to ask about the fatigue and other symptoms Im experiencing. He might refer me to a specialist or send me for a blood test or might say it is just the fibro. But like you said I know there is something else wrong with me. It is difficult when we think we have something else going on with our health but we just get fobbed of with more medication or sent to support groups. Is there an end to the way we are feeling. I dont know how you get diagnosed with fibro. I went to see a rhuematologist who suggested I have fibro. as I have stiff joints, dizziness, fatigue etc. they go by the symtoms you have to make a diagnosis I think. How did you get diagnosed for CFS?

Good luck with your treatment and take care of youself.

David

[Patdoyle in reply to Golfer15]

Hi

I wa s diagnosed with CFS about 7 years ago after umpteen visits to rheumatologist because of the pain. Eventually I asked to see a neurologist who diagnosed CFS. My GP thinks I have fibro too. Have to say I find after every flare I feel as though I lose some ground. My mobility is definitely getting worse. Just r ecently I went back to see another neurologist because I have such wierd symptoms I was convinced there was something else going on but apparently not as I as discharged back to the GP. The fatigue and dizziness really stop me from doing things and having been a really active and fit person I find it very frustrating. We have booked a holiday with my family in August and it looks as though I will have to pullout unless I suddenly have a miraculous recovery. Don't feel as though I can fly feeling like this. Family not happy as you would expect. Well moan over!

[Trulysad-76 in reply to Patdoyle]

Bless you Pat, CFS is a horrible illness to have and I find some doctors fob it off. I experience severe vertigo, as if I'm going to fall backwards. Also having problems with my vision, have some sort of lumps on the whites of my eyes. Numb finger tips, to much to list.

I will say this, try not to pull out of your holiday, instead explain to the family that you might rest a lot, have early nights and not able to sight see but you can enjoy it still. It does lift your spirits a little, you just have to pace yourself and your family have to understand that it's exhausting for you just go on the flight let alone the rest. Start planning little rests, either by the pool or in your apartment. Don't allow your CFS to be you, just apart of you xx

[Hidden in reply to Patdoyle]

Oat, I went on holiday with my family last year. We have young children so you can imagine it would be busy HOWEVER, my wife understands my ME and I spent a lot of time lying in the sun resting. I do not remember getting there as I was exhausted and my wife said I was like someone drunk, the first few days are a blur but I am very glad I went.

You can get a wheel chair at the airports and sleep the rest of the time it is manageable, honest.

[Trulysad-76 in reply to Golfer15]

Hi David, getting diagnosed with CFS was difficult in the sense you have to have the symptoms for 6 months. Something genuinely triggers it, mine was food poisoning and extreme stress and I just never fully recovered. I feel like I have flu when I have a flare up and am bed ridden.

A specialist hospital can diagnose you and your doctor will be able to send you to one.

It's a hard one i think if your already diagnosed with fibromyalgia but seems to go hand in hand, keep at your doctor. If your not feeling right there is normally a problem.

Take care

[Ebbysmum]

CFS/ME and fibromyalgia tend to go together. You will see if you read about it, that there are the key fibromyalgia pain points, so if you think these apply to your body then have a chat with your GP. Although my GP said it wasn't worth having another diagnosis added to the list when I asked about it!

Of course we can all have "normal " things wrong with us too! I've just had a hip replacement for severe osteoarthritis in my left hip. I had been attributing the hip pain to my ME, and so lived with it for a good time, but having the hip replacement took away the constant arthritic pain, and my life has improved a bit as a result!

[Trulysad-76 in reply to Ebbysmum]

That's really good news that your a little more comfortable. I am not sure what it is but I know through having CFS the pain/aches are different. I have joint pain now, limping which I found out I have soft tissue growing on my big toe joint. Just things that wasn't there for a good year.

I really hope you manage to stay a little more comfortable. I feel for you, there is nothing normal about having a knee replacement. It's very painful and a long process to become well x

[carer999]

Trulysad-76 did the B12 injections help and how many did you have and are you continueing with them

[Trulysad-76 in reply to carer999]

My doctor won't give me the B12 injections so I have to make do with getting my own. I get the slow release tablets as they help all through the day x

[Trulysad-76 in reply to Trulysad-76]

The injections where steroid injections for my shoulder x

[carer999 in reply to Trulysad-76]

Did you have your b12 levels tested to see if you are deficient

[Simmeke83]

Hello

I can relate to this post so much. I am going through probably my worst flare up or god knows what it is I have a sore throat and infection in both ears atm. I am pushing myself so much to survive a day at work it's stressing me out so much I have severe anxiety as I'm scared I'm gonna lose my job. Yesterday only slight temperature change outside made my hands go purple and yellow and I feel like I was in the middle of winter. Not to mention that by the time I arrive to work my energy is gone and I feel like a stiff tin. I recently thought how to describe the best how it feels everyday when the fatigue kicks in. You just feel like you are in a dream or on auto pilot and everything you do and lift seems much heavier and difficult like trying to run while being in the water. My pain is mainly concentrated in my legs and lower back but I get one in my neck as well. I am 34 and not only put weight on after antidepressants and inability to do exercise but I slouch and when I look in the mirror I feel like I'm 60. Does anybody have a similar experience with feeling that even a cup weighs a kilogram when you try to lift it?

Also mental health is in the bin atm I am constantly angry and filled with hate although inside its not me I'm a very shy and gentle person. So I'm feeling really sorry for myself atm and gonna stay under the blanket hoping you all feel good and have a pain free time.

Kami

[Trulysad-76 in reply to Simmeke83]

Hello Kami,

Of course I can relate to the weight of things, i feel completely debilitated some days to the point that even walking up the stairs is to hard.

I also relate to mental health, when your physical health deteriorates it affects your mental state. Some days are easier but on the whole, it's a real struggle and thoughts of suicide has crossed my mind in the past.

(Suicide - everyone thinks it but saying it loud or writing isn't a done thing, but I'm a straight up person, just so you know)

Today is hard, my legs feel heavy, my arms don't want to lift and my hands are aching. Can't decide whether to give in and go to bed or struggle through, possibly dropping stuff or knocking myself etc.....

I am here if you need or want to talk. You can inbox also

[Hollygreen]

Truly sad hi. May I say that functional is about the way the body is working rather than the body reacting to infection or an accident