REALLY STRUGGLING
Posted , 9 users are following.
Hi Every one,
I posted on here the other day, as the last week 10 days I seem to have taking a really bad turn, I have been diagnosed with PMR and put on steroids I also have Fibromyalgia, and unsure if I should put this in that post.
I have not slept for three nights with the intense pain all over, my arms and legs fell like I am carrying weights on them, and never before have I had pain in my face and particular my Jaw, during the night last night I honestly felt like just getting in my car and jumping over a bridge, I Normally cope with this pain but pain and no sleep is not a good combination, I am in pain from the tip of my head to the tip of my toe, and I also get frustrated as people god love them say " you look well" as its a illness that people cant see its difficult for them to understand, is this normal? Is it a flair up? is there anything else I can try, I really and desperate for help.
Sorry for the rant but just a little bit frustrated.
Lindsey x
0 likes, 6 replies
Anhaga lindsey65522
Posted
I had a quick look at one of your recent posts. But it wasn't that recent, several months. At the time you were at 5 mg and had pain. What dose of pred are you on now? Did things ever get better when you were at 5 mg? Are you able to distinguish the difference between the fibro and the PMR pains? I ask that because for a long time I could tell the difference between PMR and osteoarthritis, but in recent weeks I'm getting a bit muddled and never quite sure if I should be tapering or not.... But looking at your history one suspects that your PMR was probably not under control a few months ago and if it was never really corralled again no wonder you are suffering now.
lindsey65522
Posted
Hi
Thanks for the reply, the fibro is a constant ache, I was diagnosed with PMR last year as my inflammation levels were so high and the steroids helped with that, but never ever felt a big difference with the pain. But the last week or so it has stepped up big time and just don't know what has caused it or what to do with this.
Lindsey
EileenH lindsey65522
Posted
You mean the steroids brought your inflammation levels down but didn't help the pain? Not at all? In that case I think your doctor may be barking up the wrong tree. PMR is the name given to a set of fairly typical symptoms - and they can have a lot of different underlying causes. The PMR we discuss on this forum is very characteristic in responding very quickly to a moderate (15-20mg) dose of corticosteroid - both pain and inflammation levels.
However, what dose are you on now? I agree with Anhaga, if this is PMR then you have possibly never been on enough pred. And not treating PMR adequately does increase the risk of it progressing to GCA, which could cause worse PMR symptoms plus some of the other things you complain of, including the facial pain. Is the jaw pain all the time or is it worse when you eat? Do you have a tender scalp? Any visual symptoms? Sweats, especially at night? Anything else?
Why shouldn't you mention the fibro? Quite a few people have both - but most of them say they are able to tell which is which.
Miki680 lindsey65522
Posted
so very sorry to hear of your pain and struggles. I cannot imagine what you were going through, the pain with no sleep. I do remember that kind of pain when I first had it, before I was diagnosed with PMR. I wonder if you are taking enough steroids, or that the fibromyalgia kicked in double. I am sure you have tried hot showers But still I find they are such a great relief that I mentioning it again. Best of luck to you, with considerable pain relief in store, Amy
margot34956 lindsey65522
Posted
Hi Lindsay, just to say I have read your rant and care that you are so frustrated, I can't offer any help except to say good on you for your rant, it does help to do that.
I hope you will get some sleep. I wasn't sleeping in the early days of PMR and now take magnesium which does help.
Flutterbie57 lindsey65522
Posted
Hello Lindsey, I am familiar with the phrase about being in pain from the top of my head to the tips of my toes .I am using it a lot lately. I have Fibro for 22 years and PMR for 3(?) . PMR was different pain, but steroids (20mg) helped with PMR pain within 24 hours. For 22 years the Fibro pain was fairly consistent, so I was familiar with that problem.
?For the last few months my health has really been deteriorating AGAIN, so I suspect maybe I have now got something else as well, or maybe (Dr suggested) I am having a Fibro flare up after all these years. I did not know you could have a Fibro flare up. I am having new weird symptoms all the time and I am usually in pain all over in varying degrees. I wasn't sleeping either and then I accidentally forgot to take my pills one morning and I took them at bed time instead. I fell asleep ! So Dr suggested I always take them at night so I get some rest. I decided on the weekend (because of heartburn) to revert to taking pred in the morning again, and Saturday night I could not get to sleep again. Maybe you could experiment with taking your drugs at different times.
?I think you should talk to your Dr again tho about PMR, if Pred did not help with the pain.
?I hope you find lots of wonderful things you enjoy doing to take your mind off all the pain. Tomorrow might be a better day.