Newly diagnosed

[EastMidsLass]

I was diagnosed with fibromyalgia in the autumn of last year. I was diagnosed with polymyalgia rheumatica in 2018 and have been taking prednisolone and laterally methotrexate to keep it under control. I was initially prescribed amitriptyline for the fibro but due to having atrial fibrillation I couldn't take it as it set the AF off. I would like to ask if anyone has any tips for dealing with the cognitive problems that come with this condition? Some days I can hardly string 2 words together and my head and jaw feel so tight and achy. Are there any supplements I could try? Thanks

[Gigiruth]

Hi EastMidsLassWelcome to the club!

You could check with your dentist if you are grinding your teeth when you sleep. That would contribute to the jaw ache.

I external memory to help with the cognitive stuff. So I have other ways of remembering important stuff.

I have hooks on doors with blackboard hangers and either have pictures on them ( red flame for heater on blue for off or write in chalk pen.

For me it is accepting I can't hold everything in my head. I use a phrase when explaining to others. People want to be kind and often say they know what's its like... "We all forget things/ it's just your age/Menopause etc. This does not acknowledge the very real problem we have.

I use the phrase "I have medical memory problems" and it would help me if you would ..

.I get a more appropriate response.

As newly diagnosed you may try all sorts of things to make day to day life easier. Do share and search for tips on here.

Take care of you

Fibro hug

Gigi.

[EastMidsLass in reply to Gigiruth]

Thanks for your input. I have decided to look into supplements for cognitive clarity. I have got a very good health food shop locally.

[Lillylilac]

Hi EastMidsLassWelcome to the group. I wouldn't like to say what supplements to take. There are so many out there. I would advise do your own research as everyone is different. What suits one doesn't suit another.

Since I was diagnosed I finished work which helped me alot. I do swimming if I can and I do very gentle exercises. I also do jaw exercises which I have done for years. I do feel that gentle exercise can help with the pain and can also help with the cognitive stuff. I also do everything very slowly and I mean slowly. It drives my husband mad but, it stops me from falling, doing things wrong. I also feel that because I now do things slow my brain isn't going too fast and I can usually say the things I want to say. Of course there are days when I can't focus on anything but you just have to accept it.

Sorry I can't give you any more but I really hope you find something that helps you. Sending comfy hugs

Lilly x

[EastMidsLass in reply to Lillylilac]

Thanks for your input. I am going to my local health food shop tomorrow to get some advice, they are very good. I am also very slow especially walking which I find very frustrating.

[Miacaro45]

Two things standout with your PMR: head and jaw pain. Please have your doctor check you out for Giant Cell Arteritis which is associated with PMR. This way you will know whether you have a problem or you just need a night guard from your dentist. The best to you.

[EastMidsLass in reply to Miacaro45]

Thanks for your input. I have had 2 incidents of investigation for GCA and both were negative. I think the jaw pain is due to gritting my teeth 😬