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
elizabeth40672 Guest
Posted
Hi Angela, I read your story and thought that there was little I could say to give you comfort, then realised that hopefully knowing that someone has read your story and is thinking about you will be enough.
Not that this will make you feel any better but I thought I'd share my journey with PMR and AS with you. II have had ups and downs since 2016, I am now 51 and it is not easy. Currently I am being told I have not got PMR by the Rhummy and he wants me off steroids as my Osteoporosis is getting worse because of them. The only thing that has made me feel any better over the years is steroids but I feel that I should listen to him as he is the expert after all. Currently I am in a lot of pain, in my neck, shoulders and legs and am waiting for a new drug called Golimumab to kick in. It could take another 3 months before I begin to feel better if they have the diagnosis right.
I do still work and find that getting going in the morning is better for me mentally if not physically. I had a phone call from the Rhummy nurse the other day who caught me at a bad time and told me I was having a flair and I should go home and take pain killers and lie on the settee. Made me laugh as this is the worst position for me to lie in.
Why did I tell you this when you are in such a bad way? Probably to let you know that in a small way I know how you are feeling. You sound like a very brave woman and should know that you have done amazingly so far. Someone far better qualified than me will hopefully post a response soon!
I hope you find something that works for you but know that we are all on this journey together.
Elizabeth
lynda62707 elizabeth40672
Posted
hi Elizabeth....I'm on my my way to bed right now, but I'll text you tomorrow.
you're NOT alone!!😘Lynda
elizabeth40672 lynda62707
Posted
Hi Lynda, you need to reply to Angela (think you hit reply to me instead!) Sleep well! Elizabeth
Guest elizabeth40672
Posted
Thank you for sharing your story Elizabeth. I hope that you get some relief from Giolimumab. Osteoporosis is a great big problem on long-term prednisone, and you are very young.
My recent bone density test showed that my bones are 75% denser than other women my age.... and now I'm going to be undoing that. I am taking Fosamax, a drug I SWORE I would never take. But with my high risk of falls due to my MS, I really have no choices.
Please keep in touch and we'll march along together.
Be well.
EileenH Guest
Posted
Don't give pred an undeserved bad name. Approx. 40% of patients on pred are said to develop osteoporosis - 50% of the US population will develop it at some point. A study from the Mayo shows that at PMR-level doses there is only one so-called pred side effect that is worse in PMR patients on pred than a matched population not on pred and that is the development of cataracts:
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
I have been on pred for 10 years with no discernible side effects, or any that did appear went with a bit of application and knowing how to deal with them. After over 7 years on pred, much of it at above 10mg, there was almost no change in my bone density as measured just 2 months into steroid management.
If you bone density really is so much higher you should, like me, be fine on calcium and vit D for at least the first year or two.
Guest EileenH
Posted
Ellen,
thank you so much for this information and education on the effects of prednisone on bone density. I am in love with hopeful info and so am glad to receive your reply!
So theres a good chance that I will remain very dense. and so i have thrown the negative thoughts to the side. This not something I will concern myself any longer . clears up room in my mind for POSITIVE thoughts!
Blessings and good thoughts sent back your way!
A
Silver49 Guest
Posted
I am sorry to learn that you now have GCA and PMR, Angela. You have coped with so much and adapted well to all that has come your way. It is a huge blow to have this on top of everything else. I am not an expert but have just reached the end of my PMR journey after a little over 4 years. I wonder if the pain in your hands is a part of PMR which will eventually ease. I have had this problem on and off and I find even now it happens if I do something which means my hands are in the same position for too long. It has eased over time and I can do more so I hope this will be the same for you. I realise it will be harder for you as it is affecting some of your main pleasures in life. There are others on this forum who are experts and can give advice/information and will be along soon to help. This forum has people on it from many parts of the world so we are awake or asleep at different times. The plus part of that is that you will usually get a reply at least of support even if the person is unable to answer your questions. Best wishes.
Guest Silver49
Posted
Thank you for your kind reply, Silver,
I am glad to hear that you are at the end of your PMR journey. And thank you for sharing your hope for my hands!!! I do appreciate that immensely.
Since I'm on high dose prednisone for GCA first, then will be on lower dose for RMA, who knows when there's a doctor who will even think of testing for carpal tunnel vs. MS vs. RMA. These diseases require a patient patient.
bob73443 Guest
Posted
Angela,
I am so sorry to hear of your despair. I can only imagine what you've been through.
All I can say is that the PMR-facet of your troubles might not be as bad as you think. When I first was diagnosed, I was very depressed. But after that initial high dosage of prednisone, and after tapering down to more reasonable levels, I felt better than I had in a long time.
All I can hope and pray for is that the PMR will be somewhat of a blessing in disguise for you. I hope the prednisone treatments will help you, fast.
You deserve a break.
Guest bob73443
Posted
Bob,
Thank you for your hopeful message. Yes, this journey of mine has been one heck of a ride. In between the auto immune stories, though, stands a now 63 yo life long outdoorswoman. The places I've been and seen! I did it all when I could, having no idea what was going to come down the road ahead.
I look forward to tapering down on the prednisone. The GCA treatment starts very high and lasts very long, 4 weeks at each step down.
And, ya, who knows? I could very well end up feeling better than I have for a very long time. That'd be pretty cool.
EileenH Guest
Posted
I'm so sorry to hear your double whammy - MS is awful enough, to add PMR to it is just horrible. You have had so much taken away - so demoralising.
It is possible that the pred may improve the carpal tunnel problems - it is often found alongside/as part of PMR because of the swelling it causes and once that responds to the pred it may be better. I do know of people who have had surgery while on pred but none at GCA doses because of the risk of infection. Below about 15-20mg it depends on finding a surgeon who will do it. 10mg doesn't seem to be a major problem. I had awful hand and foot pain with PMR which stopped me knitting and sometimes made typing very unpleasant but it did improve and after a few months on 15mg pred was gone. It only reminds me when I flare now.
What about trying voice recognition software to save your hands a bit instead of typing? It is so much better these days.
"I'm going to be on treatment forever, it seems" - is that what you feel or has a doctor told you that? Of all the a/i disorders PMR/GCA is one of the better ones in that they are described as self-limiting and do go into remission for 95% of patients eventually, for some as soon as 2 years. They are also well managed with pred - even though it won't feel like that yet. The PMR part in particular will improve a lot at the doses you are on at present.
There is so little I can say - except that, however bad it is at the moment, in a year you will look back and see how far you have come. For many people the first 2 or 3 months are the worst and then things improve dramatically so let's hope you are one of them. And I'm so glad you have good girl-friends - that is worth so much.
Guest EileenH
Posted
Hello Eileen and thank you for sharing your experience and advice, I do appreciate it.
I am living moment to moment, and am doing well with this. I do what I can when I can do it. And I do not push myself.... that's very strange, because with MS you PUSH PUSH PUSH. It's a weird adjustment.
And, yes, it is one thing at a time and I'm more in a place of acceptance now. First GCA and after that PMR and after that.... the remnants.
No knowing what those will be, so I'll just do my best each day. No, my doctor did not tell me I'd be on treatment forever, it's just the way I felt with these diagnoses. Time will tell, I will go with that.
And, yes, I am looking at speech recognition software, although I'm kind of enjoying the mostly unplugged life!
bob03667 Guest
Posted
Pretty soon I will be known on this discussion group as "Hot Tub Bob" since it transformed my situation and still is continuing to do so for my PMR which started almost a year ago. At my worst, before I started on 20mg of prednisone (now am down to 7mg), my arms and wrists were so bad, I was having to lift a coffee cup with 2 hands. We had to move all our dishes done to the lowest cabinet so I could reach them. Getting shoes and socks on, as well as putting on a car safety belt was a painful challenge.
I'm lucky that every since I was a boy with a morning paper route (now am turning 73), I get up at 4:30 in the morning. My neck and shoulders are very stiff, but after doing about 10 minutes of exercises in the hot tub, the pain and stiffness almost completely disappears.
I would see if you could possibly have access to a whirlpool or maybe just a swimming pool. I'm convinced that just being in water and exercising is probably the best thing you could do to keep active but to not overdo it.
Guest bob03667
Posted
Ok it's Hot Tub Bob! Thank you for sharing your experience with me. I am glad that you have found a way to ease your pain and discomfort.
Wish I could use the same hot tub relief, but with MS overheating a bit is horrible. I would never go into a hot tub, and rarely go out in the sun or if the temp is over 75-80 F.
I called the YMCA near me and their indoor pool is kept at 85, too hot for me.
One good thing.... I'm not allowed to empty the dishwasher anymore. 😃
macas02 Guest
Posted
Angela you did the right thing joining this forum. There are so many people here that will help you.
Do hope you will be feeling a little better verysoon.
Mary
Guest macas02
Posted
Thank you Macas! I am adjusting and living. I do not feel like going anywhere or doing anything, but that is my normal me with MS anyhow. I have a great home, yard, sewing room, 3 dogs, 2 cats. I'm good enough.