So Very Much Despair
Posted , 16 users are following.
New member here, seeking support.
I am a 63 yo caucasian woman, I live in MA, USA. I've had many auto immune disorders over my life time, starting with severe excema as a young child. In my teens I had a 6 month case of mono that the pediatrician labelled as the "worse case he's ever treated." In my 20's I started with Multiple Sclerosis (studies connect this to the same virus that causes Mono.) MS has had a profound affect on my life in the past 10 years. I stopped driving and activities had to fall off the map bit by bit. I do still walk, although wear braces on my lower legs and use a walker. I have cognitive loss.
I am lucky that I live in a one story home with my husband, 3 dogs and 2 cats and a lovely garden yard. I have girlfriends that take me out to lunch once each week and make sure I have rides and "dates" for haircuts and pedicures,
After what seems like an eternity of me reporting to my PCP and neurologist "everything hurts" everything got real bad about 12 weeks ago. MS fatigue is bad enough, and a thicker layer fell upon me along with "everything hurts" becoming more focused. And, as usually has happened, I became my best advocate which led to me being diagnosed with PMR and GCA, (Sed Rate and CRP 4 x normal high). I have finished the 60 mg week for GCA and am now starting the 40 MG weeks, and on it will go. GCA was diagnosed via temporal artery biopsy.
I feel like death from the steroids and the damage left behind by PMR. I'm going to be on treatment forever, it seems. I've lost the use of my hands, as PMR affected my wrists and totally closed the carpal tunnel. I had carpal tunnel surgery in 1996 and it will need to be done again, more extensively. I suppose that won't happen until I am in remission from PMR.? I do not know what I will do if the function of my hands cannot be restored.
All I had going for me is my quilting and knitting, and now that is gone. I am part of nothing now. My hands are useless. If I pick something up, I drop it. I used to type 120 wpm and I am typing now with my pointer fingers only. I have adapted my knitting to enable me to knit for limited intervals, doing none of the master level work I used to do. I cannot work at quilting at all.
I have no idea how to live like this. With the 3 disorders eating me up, it is very difficult for me to consider going out and about. It's all so very difficult. I am so very tired and do not sleep well, in spite of a major cocktail of MS symptoms meds at night time.
I really need some support, and I hope that I have come to the right place for that and advice.
Thank you and I understand what you are all going through too, and hopefully as I walk this road, I will find ways to be involved here and help others as they arrive.
Peace.
0 likes, 26 replies
Danrower Guest
Posted
Angela,
Your writing is clear and concise, and I admire the mind that generated this considered composition. To be able to articulate this so well, while shouldering such a burden! You captured the emotions which we all here have experienced, although, mostly to a lesser degree than you.
I'm in Florida, but think the incidence of PMR here in the US is less than in Europe.
With compassion and admiration,
Dan
EileenH Danrower
Posted
In Florida possibly - but in Minnesota and up that end there are lots more with a Scandinavian heritage.
Michdonn EileenH
Posted
Yes, more in one county in Minnesota. That one county is the area in the US that they talk about.
Guest Danrower
Posted
Thank you Danrower,
Especially for the compliment on my writing! There's a career and hobby behind that, it didn't just fall from the sky onto my head.
This is a better day, but of course I'm a screwed up mess. I'm living in the moment, and am starting to believe that is what we all should be doing no matter what.
I hope that you are well today.
Senormacho Guest
Posted
Angela: I just said a prayer for your recovery. My rheumy told me that my pmr is "worse than 90% of all other cases" which is why I have been on higher doses of pred for so long. I am now trying to continue the weaning off process. Walking is tough because of the pmr pains in the back of my thighs plus the fact that I have neuropathy (numbness) in my feet which varies in severity. (I am not diabetic) I also take warafin (blood thinner) because I had a blood clot in my calf a couple of years ago. I am only 63 yrs old, which these days is not ancient, but I am feeling about 93 some days. I have been relatively healthy all my life until the last few years. So I know what you are talking about when you say you cannot do some of the pleasurable activities you used to do. Mine was playing golf, which I cannot reasonably do with the pmr pains and the neuropathy. But, even though this is discouraging, I can still get around reasonably well, still driving, still working in my business (have been joined by my son who will take over in a few years.) I have suffered numerous falls and have to be careful when I am walking not to trip on something.
I have a great, supportive wife, three great adult children, and a little Corgi dog who is my only grandchild so far but sometimes drives me nuts with his barking. So, I count my blessings. Your journey has been tougher than mine for a much longer time. But I would hope you work with your doctors, do not despair, and just know that the door is open for your restored health, total or partial. Let's pray for each other!
Guest Senormacho
Posted
Hello Senormacho and thank you for sharing your story,
This certainly can be a life changing disease... well in my case diseases since I have GCA and PMR (and MS).
I think having MS for so long kind of prepared me better for this than others might be. I'm used to everything hurting and not working right, it's how I've always been. And I've done a lot in my 63 years.
I stopped driving 4 years ago, so did not need to make that adjustment now. There's still some foreign countries I'd like to see, but I've seen enough of the world, I'm good.
I'm living in the moment and acceptance. And it's helping me a lot. The high dose of prednisone for GCA is tough, but I'm still standing.
OregonHazel Guest
Posted
Hi Angela,
I'm so sorry to hear you are having such an awful time with your health. PMR on top off your other diseases seems completely unfair.
I'm 66 year d Oregon woman and just got my diagnosis/prednisone a few weeks ago. PMR seems crazy difficult to understand but I am so grateful for finding this forum. it is a warm and welcoming place with good people who are generous with their knowledge and advice.
Prayers for some pain free days ahead,
Blessings,
Hazel
OregonHazel Guest
Posted
Hi Angela I just want to tell you I am thinking about you.
Guest OregonHazel
Posted
Hazel,
I truly appreciate your thoughts and prayers, they do mean a lot to me.
And I pray for pain free days for you also,
Guest
Posted
Hello all,
I am sorry it has taken me so long to get back to you all. I wanted to reply to all at once, I hope this method works. I do not have enough use in my hands right now to reply individually, although that is what I would prefer to do. Hopefully that will be sooner rather than later. And yes I am looking at speech recognition software so that I can more easily communicate on my computer.
You've all given me great insight, support and advice, please know I feel your sincerity and appreciate it greatly.
As for my treatment right now.... The rheumatologist is first smacking me with the high dose prednisone required to get the Giant Cell Arteritis into remission. This takes many many weeks, started at 70 mg for 10 days and then reduce very slowly, 4 weeks on each step down. These high doses of prednisone bring on their own problems, as you all know. We have gotten the heartburn under control, for the most part. I break through once in a while. I am on 40 mg omperazole in the morning and if I break through in the evening, I can take 20 mg before bed. Sleep is somewhat elusive, but I am getting just enough and often catch a nap in the late afternoon when the prednisone crashes for a while. I am very tired.
I have been to a cardiologist, who is running baseline testing so we have a handle on the potential cardiac risks associated with GCA. My Primary Care Physician has seen me this week and she is the "leader of the band," and is paying close attention to all info and test results from the specialists taking care of me. I've been her patient for many years, and we have a good relationship. I am grateful for that.
My Sed Rate and CRP have gone from 4x high normal to low normal at the latest bloodwork. I do know that means nothing, that if we stopped treatment they'd shoot straight back to the ceiling, But it is good to know that the prednisone is working.
As for the PMR, this will be addressed as I wean down off the prednisone for GCA. That wean will sit at 20 mg for a while and at some point there will be a very very slow reduction in dosage. And, we will see what the PMR does. There is no crystal ball, darn it! I have noticed that the high dose steroids for GCA have gotten rid of some pain that I've been chalking off to being a part of MS. I've had pain in my thigh above my knee replacement for a long time. That has diminished greatly. And some other positive benefits: I'd been getting up ugly every morning for months, now I feel sunnier even though I am waking hours earlier than I was before diagnosis. My husband has noticed this change and I am glad for that. My arms and wrists still feel funky, and I hope that improves with time. My lower back pain is gone, completely gone. I am very very weak, and that is not a big surprise. I am working hard to practice patience in all areas of my life,
This is a lot to deal with, along with Secondary Progressive MS. This week I have centered my mind on living in the moment and doing what I can do, the best I can do. Small tasks like keeping the house tidy, sewing for 10 minutes, knitting for 15 minutes, are helpful. Friends do not understand that I am in no shape to go anywhere right now and I work to explain but this is such a clinically insane picture, so hard for me to grasp, I cannot expect others to fully understand.
MS and HEAT are a terrible combination, and it is stinking hot an humid here in New England right now. I am lucky to have central a/c and I am keeping it at 68 degrees, my best temperature year round. I look forward to mid-August, when cold fronts will start dropping down from our Canadian friends to the North.
My hands, time will tell. No one will test them or look at them or think about them until I'm much further down this road, So, as I mentioned above, I am doing the best I can do with what I've got. I do feel some despair that I have two new auto immune diseases that could take years to get into remission and that could relapse. It is never smart to look too far down the road, though, and centering my mind and spirit is helping me to avoid that behavior,
All in all I am better than I was at my first posting. And I believe that improvement is due to all of the support I have been given by all of you.
I will continue to check in and hope that once I am "used" to being this way and on the treatment that I will become more experienced and knowledgeable in order to help others that come to this board.
Peace, Angela