Interaction (issue 110)

[doglover1973]

There's a very good article in the centre pages of Interaction written by BTA Nic Wray. Highlighting the possible link between cfs/me & tinnitus. Essential reading for anyone with both conditions.

[Happyrosie]

What’s cfs/me, doglover?

[doglover1973 in reply to Happyrosie]

Hi Rosie. It's chronic fatigue syndrome or myalgic encephelomylitis. The one where you ache and feel tired all the time.

[Happyrosie in reply to doglover1973]

Sorry I know ME but wasn’t aware of the “cfs “

[doglover1973 in reply to Happyrosie]

Docs call it CFS; patients call it ME . It's contraversial.

[Hidden]

Thanks...can't find the article doglover1973 Where is the interaction part? I looked on the BTA website and also on here?

[Happyrosie in reply to Hidden]

It’s the BTA magazine “Quiet” that you get if you’re a member.

[Hidden in reply to Happyrosie]

Thanks x

[doglover1973 in reply to Hidden]

Sorry Hidden I wasn't very clear. Interaction is a magazine for people with cfs/me . I was surprised & pleased to see the article as I tried to talk to AfME about cfs/me & tinnitus last year and they didn't seem to know anything. It looks as if NicBTA has filled them in.

[Hidden]

That is good. Do you have fatigue? Take care x

[doglover1973 in reply to Hidden]

Yes I do. How about you?

[Hidden in reply to doglover1973]

I never actually named it before but yes, I do. I have spells when I feel overwhelmed - very tired and need to lie down then a few days where I have more energy. If I go to a big social event I try to have a quiet day the next day. That is interesting. xx

[doglover1973 in reply to Hidden]

If you want to talk further about fatigue there's an ME support forum on HealthUnlocked . I'm a member there too.

[Hidden in reply to doglover1973]

Will do. I've been pushing the issue aside. Thanks. xx

[Hidden in reply to doglover1973]

I've joined it, though I don't have a diagnosis... I'm on a biologic for arthritis. I'm not sure if it has maybe stopped working or something which is causing fatigue or whether it is the hearing - there have been some studies saying Imraldi Biologic can cause tinnitus but I'm scared to rock the boat and stop taking it...Thanks - it will be interesting to read advice on the forum. x

[Mat189 in reply to doglover1973]

I’m tired a lot. Even when I wake up in the morning. Does me give you headaches after doing exercise?

[doglover1973 in reply to Mat189]

Hi Mat189 Yes it can do. I don't do anything strenuous. Only very short walks. Otherwise my head aches. Have you been to your GP about your symptoms? It might be worth mentioning it.

[Mat189 in reply to doglover1973]

I did mention to doc that I was tired all day. Love my sleep and any naps I can get and I’m only 44. Even if I play golf I know I’m going to have a headache after. Not sure if cfs. I hope not bit bothering men for a few years now. There seems to be no tests or cures for a lot of things!

[doglover1973 in reply to Mat189]

Yes. That's the essential problem. There's no test for cfs so the docs have to rule out everything else . This can be a long & drawn out process but may be worthwhile. I hope you find some answers.

[Happyrosie]

And indeed it isn’t always post-viral so that it’s always helpful.

[Parrcj]

I suffered from cfs/me when I was 40 , some 25 years on i still have to pace myself . The exhaustion, you cannot describe to people it like a tap has been turned on and all your energy levels being drained from your body.

Now T has entered my life, so again fightinging a battle 🙃

I wonder if T and cfs are connected 🤔

[doglover1973 in reply to Parrcj]

Hi Parrcj That's a really good way to describe it. I usually use the flat battery illustration. How did your cfs/me start? And how well are you now? I believe ME & T may be connected. There's a higher prevalence of T among the ME population than the general population.

[Parrcj in reply to doglover1973]

I am not sure what caused ME. I was going through a really really tough time in my life at the time.

I did have to take 1 year off work, but slowly managed to regain my health/energy levels levels to work 3 days a week. The social side of my life I was too exhausted to go out and socialising/drinking was a no no. It was all about pacing myself and to be honest my body dictated just how far I could push it. It was in fact quite poorly when I think back. Now I always say from then on my body was working on 80 per cent energy levels.

Slowly I managed to return to normal life going to gym, playing tennis , even going out evenings for drinks .

Now some 25 years on I play golf three times a week . BUT will often crash and need a few days off, my body telling me to slow down. My friends all know I will be in bed by 8pm or 9pm as need lots of sleep.

I felt and was so lucky to be back to what I call normal.

Then T came into my life at the beginning of covid, I believe I had covid but at the time there was no testing was available. Eventually they took my symtoms seriously after visits to Dr and hospital for breathing problem etc and said it was possible I had caught this. I was in bed for two weeks and had to stop all social gatherings and golf , could not play as to exhausted again ! Not fully recovered now but back out there on the golf course with my amazing friends .

It is in my right ear and never stops. I was distraught at first had another fight on my hands , I have been to ent and neurology who recommend tablets that make you drowsy , as you can image I cannot tolerate as they knock me off my feet .I have not managed to find anything to help with with T and find it distressing and exhausting.k

Neurology say it one thing (neck prob) ent have no idea.!! I am sad to think I may have to live with this .

For ME - So sorry to go on, but to summon up , rest and definitely pace yourself, do what you can, walk, fresh air and outside cheers me up immensely.

Talk to people who have been through the experience as nobody will understand unless you have been through it, a bit like T you say you have a ringing in your ears and they say oh that's a shame!!!! Its so good to talk and let out all the tough times. My friends are so important having tea get togethers (not coffee it drains me 🙂).

I hope doglover you are in a good place and overcoming your ME and T. Please just feel free to send me a message anytime 😊

BW

[doglover1973 in reply to Parrcj]

Thanks so much for your reply. I'm glad you've made at least a partial recovery from ME. That's very good news. I can imagine covid temporarily knocked you off your feet. I don't work or go out socially but I'm OK as long as I pace myself. I was operating at about 50% pre troublesome T but I 'm nearer 40% at the moment. It's difficult to get the same quality of rest now. You're spot on about T. It does feel like fighting a second battle. It's nice to talk to someone who gets ME & T!

[Parrcj in reply to doglover1973]

I agree totally chat anytime 😊