PMR and FIBROMYALGIA - do you have both ?
Posted , 9 users are following.
I got Fibro pain 22 years ago. This was fairly consistent for 18 years then 4 years ago I knew my health was deteriorating again and next minute PMR pain hit me. Pred helped within 24 hours.For the last few months my health has started deteriorating again with lots of new weird and not so wonderful new health problems. No new diagnosis has yet been made, but the extra pain and new problems are not good.
?Is anyone else who suffers from both conditions, developed anything else ?
?A couple of suggestions have been made by the Doctor. One suggestion is that I am having a Fibro flare up. I did not know that this could happen. Has anyone else had a Fibro flare ?
?My new problems are painful scalp areas (comes and goes). Kaleidoscopic eyes which are apparently Visual migraines. More pain in all areas, not just the PMR areas. Extremely painful small internal lumps which are like nerve endings to touch. I did have these in beginning of Fibro, but not as many. Head sweats returned (they came with PMR) And body freezes - feels like I am going to die of hypothermia, but temperature is normal.(I had these in beginning of Fibro too) The main problem tho is all main joints giving way for no apparent reason and no pain at the time when they just don't work.. First one knee, which was then painful afterwards for months, then the other knee, both ankles eventually and then left elbow. Yes ! I have 1 good elbow. Doctor thought it was Arthritis at first, but that has now been ruled out. I was soooo happy that I didn't have arthritis. Life has changed so much that I now get so much joy out of something like that.
Is anyone else suffering similar problems ? I did read when I first went on pred that it could cause problems in Fibro patients. Maybe I should go back and research that.
?My latest problem is I fell down a step, survived to tell the tale because my Grandson saved my head, but I have torn my achillies tendon (8 to 10 months to heal).
?Now that I have had a whine, I think I will go get a good wine.... or two or three or four. some days it is tempting.
0 likes, 10 replies
EileenH Flutterbie57
Posted
Really quite a catalogue of woe - hope you enjoyed the wine at least! I can live without alcohol - but a nice glass of wine seems to put whole different light on the day!
Can't help really - except to say I find the the painful scalp bit concerning. GCA can appear in some very strange forms - and maybe it is a more generalised large vessel vasculitis which could affect a range of areas?
amkoffee Flutterbie57
Posted
Let me start out by saying I do not have fibromyalgia but before my PMR diagnosis, I suffered for many years from lower back pain . However other than that my body was pretty stable.
Your health problems are very familiar because I too have suffered from so many different things after my PMR diagnosis. I will say that some of your symptoms for instance that body temperature (cold in the hot) that comes from the prednisone. The other locations on your body that hurt could still be from PMR depending on where they are. For example one of the first places that hits me when I've either not taking my prednisone soon enough in the morning or I go into a flare is my forearms and hands. When I was first diagnosed I went to the doctor because of the pain in my thighs. These locations aren't even listed on most medical sites that describe PMR, but my rheumatologist has said that they are not all that uncommon.
Since I've had a diagnosis of PMR which was in September of 2016, I have had so many maladies I feel my body is just falling apart. I developed pain on my left side rib cage from holding a position for 35 minutes in an MRI machine. That was some of the worst pain I think I've ever had. Fortunately I have pain medicine for my lower back and that helped control the pain on my side. I've also been diagnosed with arthritis in my thumbs, I have also been diagnosed with type 2 diabetes, I am iron deficient anemic, I had a TIA, I have Sjogren's syndrome and I have some evidence of having RA.
So we're both in the same boat and I will say that it can be quite depressing to think that your body is just giving up on you. Hopefully things will level out for you and some of these symptoms may disappear. I wish you luck my friend.
Flutterbie57 amkoffee
Posted
That is interesting. I had decided that it was not the PMR, but these conditions are all so confused and confusing in how they affect us all differently. I did increase my pred for a couple of days and it did not relieve the extra pains, so I ruled out PMR flare.
I will have to look up a couple of your problems as I am not familiar with them. Hopefully they are being kind to you at the moment.
I do hope I can sort out my insecure joint problems tho as they give way without warning and falling down at this age is no fun.
Thanks amkoffee. Take care
Flutterbie57 amkoffee
Posted
That is interesting. I had decided that it was not the PMR, but these conditions are all so confused and confusing in how they affect us all differently. I did increase my pred for a couple of days and it did not relieve the extra pains, so I ruled out PMR flare.
I will have to look up a couple of your problems as I am not familiar with them. Hopefully they are being kind to you at the moment.
I do hope I can sort out my insecure joint problems tho as they give way without warning and falling down at this age is no fun.
Thanks amkoffee. Take care
amkoffee Flutterbie57
Posted
With your joints giving out are you using a walker or a cane to try to catch yourself when you fall? Because the last thing you need is a broken bone. And I speak from experience because are I'm currently laid up because I broke my ankle and sprained the other one when I fell getting out of my car. I'm not allowed to put any weight on it whatsoever. Fortunately I already had purchased a scooter so I'm able to get around on that.
One thing I want to mention to you is that you said that your scalp hurts or is very tender. This is one symptom of GCA. Which of course is a companion to PMR. But it's important that you get that ruled out ASAP. And the only way to test for that is to do a temporal biopsy. I know another symptom is jaw pain particularly when you eat.
Flutterbie57 amkoffee
Posted
I'm not using a walker or cane - yet - mentally I havn't accepted that I would probably be safer with a walker. I feel too young to have one of those
?. I can't quite get my head around it. Silly, I know.
ptolemy Flutterbie57
Posted
EileenH amkoffee
Posted
A temporal biopsy doen't rule out GCA - if it is positive it rules it in, if it is negative all it says is that they didn't find the giant cells they wanted to see there are many different reasons for that and the diagnosis must be done on the basis of history and symptoms. They can also see signs of inflammation using ultrasound if they have someone trained to do it. But being on any pred does mask the signs of inlammation - which will be applicable here.
DebbieHurts Flutterbie57
Posted
Flutterbie, I also have both Fibro and Poly and that weird symptom of a joint just giving way. I thought the latter was maybe from a pill I take, but really I've had it for a long time before I took meds. Just the other day I had hold of a cup of cocoa resting on my chest when my wrist just gave out and I smelled like choco all day! It is very scary when the knee gives out, but I now have two replaced knees and they seem to hold well enough. I feel as desperate as you do. How are we to love life like it is supposed to be loved?
Flutterbie57 DebbieHurts
Posted
Chocolate smell is good.
I have to laugh about it, so I don't cry. It is not a good situation is it. I get no warning, but I am left with pain around the joint for a long time afterwards (over 4 weeks for 1 knee). I do hope this problem improves for the both of us.