PMR and precipitating factors
Posted , 10 users are following.
28 years ago out of nowhere i developed chronic pain in my lower left quadrant. not to bore with details, in the years since the sudden onset ive seen maybe 80 doctors across the US, incouding 2 month long visits to the great clinic of the north. ive had horrible things done to me--surgeries, implants, narcotics, etc. bloodwork always perfect. but ive got sicker and sicker and more allergic and reactive and medication intolerant, multiple chemical sensitivities, etc etc. as the years went on, ive seen many holistic healers--psychics, hypnotists, soothsayers, acupuncturists, massage therapists, chiropractors, and on and on. every single one across the board said, "you are full of inflammation." all of them. Bloodwork always perfect. and here i am with pmr that came on suddenly 2 years ago.
ive read that many fellow pmr sufferers can pinpoint a traumatic event such as a surgery or an accident that they think triggered their pmr. for me, it just seems that my body has been off kilter, fighting some unknown something for all these years as described above. i know that chronic pain takes its toll on your body but a bit more background--mine started with a hemorrhagic bladder that seemed to cause the resultant pain in my right side. one infectious disease doc said: " hemorrhagic bladders are caused by a toxin. find the toxin and you will heal." but ive never found it. so here is my question: do you think theres a chance that i can ever recover from pmr, given my lengthy history of struggling as described above? Do you think its at all possible? are there other pmr sufferers with chronic illnesses that can overcome it? im at 2 years and 6 MG. thank you.
0 likes, 14 replies
mary19068 Twopies
Posted
Hi Twopies
Yes you can recover from pmr....i have! but once you have recovered from pmr any other underlying health issues may remain. I was left with Osteoarthritis and Post Herpatic Neuralgia..oh and cataracts.
However, during your time on pred your other health issues may have now abated. You wont know until you are off pred. Do you still have the pain in your lower left quadrant even though on pred?
I wish you every success in tapering off pred by going slowly and not rushing things...good and happy thoughts your way Twopies...
Twopies mary19068
Posted
reassuring, thanks. yes, i still have all the same pre-pmr stuff. no abatement. its same ole same ole. i am clinging to the hope that the pmr will indeed burn itself out, and that the preexisting conditions will be resolved. hope springs eternal, as they say. and your reply gives me some.
Anhaga Twopies
Posted
If there is possibility of a toxin, have you done the usual things, like elimination diet, checking all the chemicals including personal care products you use in your home, nearby environmental factors e.g., are you near factories or farms or do your neighbours burn wood or overuse scented laundry products? A very simple example from my experience. I had to make sure my husband stopped using a certain kind of soap as it gave me a headache, even though I didn't use it myself. Just the scent in the house was enough. A friend of mine had a skin condition, some itchy thing, and with the help of a computer and elimination diet she and her husband figured out it was cinnamon! A toxin may turn out to be not be one of the usual suspects.
Twopies Anhaga
Posted
yes, ive done all those things. there are several suspects--a foreign virus picked up from my overseas travels, a second sulpha drug blast after i had already been declared allergic, vaccinations for overseas travel, the possibility that im missing a gene that most people have that allows their bodies to break down a certain enzyme, and the list goes on. my diet is rigid, im medication intolerant, my body doesnt like most supplements, etc. if it is some environmental or food toxin, ive not been able to identify it. thank you for your help.
Anhaga Twopies
Posted
Yikes. You know, if a doctor or other specialist was able to figure you out they could write a paper which would help others. Interesting thought about the foreign virus. I've often wondered if susceptibility to developing diseases like PMR can be linked to some unknown infection, possibly something which seemed as innocuous as an ordinary cold in childhood.
Twopies Anhaga
Posted
yep. or a parasite. they often go undetected. when i asked to be tested for them, they said there are so many that you would have to be able to identify a particular suspect; orherwise you wouldnt know where to start.
EileenH Twopies
Posted
I think the point is that whatever it is that is causing the problems it is a result of a whole range of things that have probably had an effect on the immune system - and it is impossible to say any one single thing is to blame. Little drops of water, little grains of sand and all that...
I've often said I view autoimmune disease as a shop counter with a a myriad of shelves with selections of symptoms. We arrive and the assistant hands out a selection of them without really thinking about it. For some people the sets of symptoms turn out to have a pattern that repeats - and eventually someone gathers a pile of them together and gives them a label - in the past it was very often their name for posterity! In more recent years the science and technology has come on in leaps and bounds and it is no longer just the picture that is looked at but the sort of paint that makes up that image - and new names are being coined. In some cases one disorder has been split up into sub-groups and in others a few have been formed to a group. And there are still many things to be found, identified, labelled and assigned to a disorder.
What you really have is Twopies disease ...
lynda62707 EileenH
Posted
lol...Twopies disease! I like that, and I probably have Lynda's disease, and so on and so on....
I love some of your analogies Eileen😁
Twopies EileenH
Posted
probably true, eileen. but im relentless in my pursuit of the culprit which i think would reverse things. ive been told countless tmes to "find acceptance." and ive been referred to shrinks--which i refuse. i know every single relaxation and visual imagery technique ever created.
i think the constant onslaught of assaults and inflammation in my body may have led to the development of pmr which prompted my question of "can i recover from pmr?" i am sooo hopeful. 2 years and going to 5 1/2 mg pred using dsns. wish me luck!
EileenH Twopies
Posted
I think acceptance is key to living well with chronic illness, whatever it is. But it doesn't mean giving in or need shrinks. It is accepting that you are where you are and the road ahead may be rather less easy to travel than the motorway that is the other side of the flooded and raging river and there is no bridge and you can't swim. Or someone telling you that in another country the other side of the world you would be able to do something - that's fine, but you aren't there, you are here.
Your quest to identify a cause is a bit like wanting to be 5 years old again - it can't happen however much we'd all like it. We are where we are...
lynda62707 Twopies
Posted
Twopies...I've got no words of wisdom for you (I certainly wish I did!) ....but I just wanted to tell you that my heart goes out to you. you've certainly been through Hell!
sending good thoughts....please keep us posted.
Twopies lynda62707
Posted
thank you so much--it really helps. id like to help you too if only i could. and the funny part? i dont look sick!
MariGrace Twopies
Posted
Good evening. I've read your post and the terrific replies. Our life journeys are a lot alike. Am nearing 71 and realized in the early 90s I've had an autoimmune disease all my life. It was possible to track the symptoms of Behcet's to my very youngest years and it was certainly never going to be diagnosed where we lived. There was a theory that strep, early in life, could trigger Behcet's. I had rheumatic fever at 2 years old. That could be it - or not.
Now, Hashimoto's, Behcet's (have symptoms - all out disease in remission) and PMR , my rheumatologist told me that I'll likely show up with more. They morph and change, Eileen was SO right in all that she said.
The rheumatologist that kept me alive in VA said to me (wisely)... "You must grieve. Grieve your health, then fight." I was already fighting. They'd told me "You will never" again and again..." to so much and in my mind it was, "Hide and watch!" Daily journaling, laugh therapy, meditation (faith), everything worked together. It was my joy to do everything they told me I would not ever do again. Was that their psychology? Maybe - or not. I went on, recovering from legal blindness, and taught for 22 years after two years of active disease.
It's too funny. I'm the one that said, "I will never take prednisone again." My dose was 100mg a day along with imuran, cholechisine, 800mg of naprosyn 4x a day.. and others I don't remember. My body was a walking drug. It worked. Remission. My teaching career continued, my family had a mom, it was amazing.
Fast forward - PMR. What a shock. Now, prednisone is my best friend, but this week the doctor is going to restart imuran with it. PMR is kicking me and the doctor is going to try to keep the dose of prednisone where it is (10mg).
Twopies, I appreciate your spunk and spirit, I understand it.
My body is allergic to most medications - even NSAIDS - makes life tough. That allergy happened after taking all that naprosyn. Had one too many pills.
Am wary of any new med and will only take a tiny portion, in the morning, to make sure it isn't going to be bad.
We have, in my family, a genetic link. There are others with autoimmune diseases.
Consider a journal. (Mine were in the dozens and have been shredded, now. It was the best thing ever to write them, though!) Think about finding something you love to do and try doing it every day. It is healing. My apologies for the length. My heart ached when I read your post because it seemed so close to my world.
My hope is that you find the answers you are searching for and it is great that we all have found such a great support group. When this journey started for me - there was no internet. I called the National Organization of Rare Diseases - often. They were so terrific. They made me feel human.
We can do this and help others along the way.
Am in at a year and 8 months with PMR. It has its own life.My doctor and his APN have cautioned my thinking that being off pred is going to happen. That is o.k. But. If this is it then it is going to have to be the best it can be. Once again - must exceed expectations, to do what they say probably won't happen . Yep. Making those plans!
You do help others, we all share something we don't want and we are trying to figure out how to navigate this road. Your post helped me. It helped me remember how I had to work to overcome years ago. Not a bad thing to remember. We can do this.
My best to you. MariGrace
jeannae68307 Twopies
Posted
Absolutely, I believe that you can get this to go into remission. I am not in remission and have a lot of pain but I am down to 1/2 mg. gutting it out trying to get my body accustomed to this lower dose. My adrenals have been forced back to life and haven't
had a bladder infection in months. It took me 50 months to get to this point. I had aches and tender hips for several years and pretty severe pain in my earlobes and at first they thought it was polychondritis but my labs were negative. THEN, I contracted an adenovirus and after 6 weeks was diagnosed with PMR and had elevated esr rate and crp. Endocrinologist said i may have to gutit out for a few weeks to see if my body will adjust. He was right about the adrenal insufficiency so we will see. Keep us posted. Good luck.