Symptoms confusing me..

[klairv0yant]

I feel so heavily tired, my body feels heavy - that is the best word I can use. I've decreased my dose from 25 to 20 11 days ago. I'm so upset with how beat up I feel, muscles cramping, stomach has gone back to horrible Ileus/paralysis of colon, and confusingly so: my chest hurts ! I'm at a loss, my partner suggested going back up in dose. I KNOW it's not a RACE. Just no support here to help me understand,realistic expectations. I've SETTLED to doing so little each day, but this inability to lift my arm without it feeling as if a 15 lb weight is within it maddening!

[DorsetLady PMRGCAuk volunteer]

Hi,

Would agree with your partner - go back up to 25mg.

From personal experience I would say reducing by 5mg at this level is too much. Go back up, get yourself stabilised, and then, and only then, try reducing by 2.5mg, maybe using a slow reduction plan if necessary.

You say - no support here - do you mean from family or generally. Do you live in UK, there may be a support group nearby. If you really feel so alone maybe you need to speak to your doctor about things.

Do hope you soon feel some improvement.

[klairv0yant in reply to DorsetLady]

ThanksDorsetLady- I appreciate this community ! I'm in the U.S. , honestly I don't have anyone who has heard of PMR there's a "is it like" conversation with people. I don't know what it is, let alone what it's "like" towards other diseases. (Only since end April started at 60mg)

Plus I've lost many of my friends; I was the doer, planner, with being unable to do, my friends have moved on. Not for anything other than busy summertime . I am grateful they are there if I reach, but honestly, I'm so fatigued? Drained? Gone? That I'm aware that I've nothing to give at this time to them .

I did take my 25 mg today. I hope it will kick in, as I'm so ... Pffff not me! (This from a person whose had 13+ surgeries ) I usually bounced back from them - this has me with no bounce

[DorsetLady PMRGCAuk volunteer in reply to klairv0yant]

Hi again,

Unfortunately this illness, along with GCA seems to affect the 'doers' of this world, and we all find it very difficult at the beginning to accept that we can no long be superwoman or man.

Like you, before I was diagnosed I had never heard of GCA - but then neither had my doctor, I think! Which is even more worrying.

Unfortunately both the PMR and the Pred can leave you feeling fatigued - so a double whammy to cope with. But it does get better - honest.

I think the most difficult thing is coming to terms with a life changing illness, but life does go on, just slightly differently from before. You will adjust to it, and hopefully you will find a way to explain to friends and family what 'it' is! Kate Gilbert's book - Living with PMR & GCA - A Survivors Guide may help - available from Amazon.

And although you may be the other side of the "pond" we all consider ourselves your friends, and will support you when we can.

[klairv0yant in reply to DorsetLady]

Oh, forgot to say I did get Sara's book . 😁

[Hidden in reply to klairv0yant]

First a hug Its draining mentally and physically isn't it .That, Whats it like question? It's like intense pain(compare to the worst tooth pain only every where ) and having had you puppet strings cut after you have climbed everest . Is my answer .I had never come across this before and most people you know seem the same it's an odd one isn't it . Yes this arm weakness ,soooo frustrating I get so very angry with myself . This is a good place to at least accept that it isn't you it is this awful condition and when it has other conditions to play against sometimes we don't know which one to blame .That is where the doctors should help us .I find the Rheumatologist to be more help than the doctor mainly because with mine at least I do feel as though she is interested . I do hope you are feeling more 'up ' take each day as it comes and remember this site is a mine of information and support .( Dorset Lady is brill lol )

[klairv0yant in reply to Hidden]

PJRW - so true about strings cut-exactly how it feels, as if I have to flop from space to space at times. My day is better today, I upped to 25 mg and did take my dilaudid as I'm allowed. I have watched so many people get opioid addicted that I feel ??? Cautious to a fault (sigh) that's a release 😊.

[TooSore]

There are many of us here from the states. If you do the drop down by your name you can look for people near you. Maybe someone is close by.

[SheffieldJane]

I agree with your partner and Dorsetlady, you've got all the symptoms that I would regard as a flare. I would go back to 25 mgs, let the symptoms settle and then reduce using the dead slow method described here on this website. It took me about 4 months to reduce by 5 mgs, I used 1 mg tablets and increased again at the first sign of trouble.

This is the first time I've heard of Ileus/colon paralysis, I will look it up. I thought " oh no not more horrors!"

The rest of your symptoms I recognise. I was too long on the iPad yesterday and felt like I had a broken arm all night. Good luck!

[klairv0yant in reply to SheffieldJane]

Sheffieldjane- my Ileus/colon problem IS NOT RELATED to PMR! Don't worry about that,. It's a preexisting condition

[Lafontainepam1]

You have reduced to much at one time. If your arm is that heavy you need more Prednisone, go back up to 25 and stay there until you feel better. It is not worth it to feel this way. I'm from Michigan and have a sister, a aunt and a cousin that has this. I have had it for over 4 yrs, started on 15 mg. still on 4 1/2 , but need a few weeks to be fully there from 5mg. Things cannot be the same, adjust your life and be thankful for leaving most of the pain behind. 💕

[klairv0yant]

Thank you everyone here! I've taken your suggestions and will continue to Listen to my body. Though at 55 to be this down is quite a shock! It's good to hear a light is somewhere down the tunnel 👏👏😘