Fibromyalgia making me constantly ill.

[Jules13]

So I saw my specialist again this morning. I had been doing so well with my RA. My blood tests were good, the inflammation was good, and they had lowered my MTX dose because of that.

In January I had a full body examination by the specialist nurse, and after wincing in pain at all the pressure points he pressed, I was told I had a secondary condition of Fibromyalgia.

I read a bit about it and it seemed that the best way to deal with it was the same as RA.... Good diet, regular exercise, sleep, and definitely no stress. But since January I have had back to back throat and sinus infections, week after week of antibiotics, and every cold and virus that passes my door.

I have about 1 day a week where I feel ok, and then I feel crap again. I think I'm doing everything right but I feel achy and tired all the time, and its not my RA. I'm so fed up and am at my wits end.

[BUDGIEBURDEKIN]

Hey, sorry that you have now joined the ranks of fibromyalgia, one of the worse things is to relax and welcome your illness into your life cos it will be with us for a long time but you won’t suffer all time , lol you can have a day off sometimes. What I find to get relief is to take things slower and not rush around because your having a better day because it will make you suffer the next day lol. Sleep is very good for Fibromyalgia, now the sleep part getting to sleep lol and then it’s staying asleep cos if a fly goes by and farts you’ll wake feeling bad.

It doesn’t matter how you sleep weather its with drugs from your dr or wacky backy. Just sleep, that’s how I do it lol. In a paper or on the web somewhere, but wacky backy is better for fibromyalgia than most other things because it makes you sleepy and you will sleep.well. There’s ares lots of support with it. Take care.

Philip.

[Jules13 in reply to BUDGIEBURDEKIN]

The funny thing is I never have a problem going to sleep. I read for an hour and drop off doing a nodding donkey. But at 5:30am (even with the clocks going forward) I wake up and then have head spins. Brain spins.... just then I cant fall back asleep so I'm only getting about 5-6 hours a night. I am waking ever more cranky and in a terrible frame of mind. Arghhhhh.

[andy9131 in reply to Jules13]

I know exactly how you feel you could be describing me, fall asleep instantly I go to bed then anytime from 02:30 wake up brain going 100 mph end up getting up horrible

[sylvi]

I am afraid you will have to look at this pacing lark more seriously as fibro is a b"""""d and you might need to accept you will need help with drugs. I don't use cbd oil as all the drugs i am on would compromise the drugs i am on. I have heard of people having good results with cbd oil. I hope you get some answers.xxxx

[Jules13 in reply to sylvi]

Thanks Sylvi. I've read a lot about it I am just a bit of a control freak and hate that woozy feeling. I know CBD oil isn't the same as smoking something but does it still put you in that woozy state?

[thelmar in reply to Jules13]

I have been taking CBD for over a year, alongside my RD drugs, heart drugs, etc. CBD only has the minutest amount of THC in it which is why it is not illegal in the UK. it is the THC that is the psychotic part so no, I don’t feel woozy.

[Jules13 in reply to thelmar]

What does it actually do then?

[thelmar in reply to Jules13]

Depending on which strength and type it is great for pain, inflammation, stress, sleep problems, etc.

[nablur in reply to Jules13]

The cbd is not regulated and very difficult to measure.

[Nessa28]

You're punishing yourself . Be kind slow down and find a pace you can work with . This is from the woman who I think is reaching burn out . You know your body and its rebelling because you're not listening to it . Both comments are right here with fibromyalgia you will need to sleep rest and pace . Just don't couch potato . I'm sending you a hug 🌷it will sort out a little soon 🤞xx

[Jules13 in reply to Nessa28]

The only thing I feel I can do is be a couch potato when I'm feeling this zonked. I cant even find the energy to do anything else and the best way I deal with stress is to watch something that takes me away from it all.

[BUDGIEBURDEKIN in reply to Jules13]

You got it girl. Lol. REST.

[nablur]

I feel exactly the same with the same diagnosis. It’s getting worse not better. Constant pain, I can barely move my shoulders and every day something hurts worse. It’s really depressing and debilitating and all they offer me is a course of Prednisone which makes me crazy. 😓

[Jules13 in reply to nablur]

Noooooo. Do not take the steroids unless you go into massive flare. I swear they brought on my depression. I have never felt so down in my life.

Have you access to a sauna or jacuzzi? The heat is the best thing for you. Xx

[nablur in reply to Jules13]

Thanks Jules and I’m sorry that’s been your experience. I don’t like the way steroids make me feel but they do help the pain. This is way beyond hot water.

[Jules13 in reply to nablur]

No I know but long courses of steroids can really make your mood so low. God I wish there were safer alternatives x

[Bleakin]

Reading your posts regarding pain , have you tried infrared (I have a Beurer lamp