During my teens I had Over Active Thyroid, and lived on a high for a few years before diagnosed, and had it removed. Since then had various autoimmune problems. The latest is Sjogrens Syndrome, which they say I could have had for years, and having the ANA antibody I understand when active can mimic like Rhumatoid Arthritis, I have had. Now my fatigue is very lowering, and my family can not cope with it, they tell me to get out, do this or that. I tell them it's not that I'm depressed, I just ache, everything is an effort!!
I would like some ways to cope with it , Thankyou.
Hi
my hubby has been prescribed sodium valporate. It is an epileptic drug which has a side effect of stopping pain being felt. It was prescribed by the m.e./ CFS specialist . She said patients with epilepsy reported that there arms or legs were numb and they realised it's potential use for people with pain who suffer with m.e. / CFS .
worth asking your gp? Or specialist ...
As for your family they I am sure care deeply for you and are just frustrated as you are. I am a Carer and it is a tough illness to care for the fluctuation of fatigue and little waves of energy can be annoying as you can get depressed and feel that the person you care for will rally themselves up to do what they want but give in to what they aren't bothered with. It's not true ... But it's the tough side of living with someone with CFS. If they didn't love you they would just ignore you and get on with their lives . They obviously love you and are getting desperate for you to get better ... Try to see they care but are just misguided ...
I don't really have much to say, but good luck with it all.
Personally, I'd try to focus on the stuff you enjoy the most, but I think that you will probably be better at knowing what that is than me! Music? Reading? Are you able to get out to sit outside?
I think Sally's probably right about the desperation people can feel when someone they care about is feeling bad - unfortunately it can come out in ways that make things worse. Things like this can be really confusing for the people around you, as well as yourself.
Hello again,
Thanks for that, I shall be going in a couple of weeks, I will let you know what they say! ( I'll most likely be back to MY NORMAL by then it's always the way.) Pity we car'nt just go and be seen when we feel bad. You've already made me feel better about the family. When your fatigued your mind really doesn't let you think logically, like considering how they are feeling etc. anyway I'll let you know how I get on.
Hello,
Thanks, I have lots of interests but haven't the energy or inclination to concentrate on them. Although, I do Sudokos. Because of skin sensitivity, I avoid sun and strong light glare, due to Sjogrens Syndrome/Lupus etc. Thanks for imput.
You've already taken one step for coping: posting to this forum. Are there any CFS/ME support groups in your area? If so, and you have the energy, you might want to attend. I have the same problem with my husband that you're having with your family. He keeps telling me that if I go out I'll feel better. As they say, "Duh!" I'd love to go out but don't have the energy. It's very hard for people to understand.
Sorry to hear of your problems. How I dealt with it was to ask someone if they ever had flu, and if they remembered how awful they felt, exhausted, aching all over, and too weak to arm wrestle a kitten. Then I tell them that I feel that way ALL THE TIME. It helps them understand what it is like.
(My first thought was "hit them with a stick" but I assume that is probably not the best way to deal with annoying family members. ;-))
Something went wrong, so am trying again. My husband is just the same!, he thinks fresh air would make me feel better!! We're in Pembrokeshire so groups for that might not have been formed. I have joined Lupus as I was diagnosed a couple of years ago, now last visit to Rhumatoid clinic said most likely Sjogrens Syndrome, and could have had it for many years! Which can show as very fatigued! These are autoimmune based. Anyway, thanks for input.
Hope this time it goes right, same happened with Jackie's answer. Anyway if you read Jackie's you'll have an idea of where I'm coming from. Now my normal head is back!! I think some people just car'nt get their head around our problem but when they have proper flu they are the first to collapse in a heep. Thanks for imput.