PAIN OR NO PAIN

Bones, joints and muscles
1

Hello all and thank you to those who are supporting me as I arrived here shortly after being diagnosed with GCA and PMR, and already have Secondary Progressive MS,

There’s a vexing question in my mind this is kind of irrelevant but curious. My diagnoses are solid, with bloodwork and temporal biopsy and symptom analysis, so there’s no question I am in the right place.

The vexing question is that as I read other people’s stories I see talk of furious pain with PMR, and I do feel for those in that much pain, it’s a difficult thing to live with.

Tracing back time here, I believe GCA and PMR descended upon me in early April 2019, when a triple layer of fatigue (add that to the MS fatigue!) and odd stiffness in the morning began, along with screaming headaches. My shoulders, upper arms, hips were so stiff in the morning I could not roll over in the bed and had to invent a new way to move around. It took me a long time to get up, rolling, and ready for the day. Showering and dressing took forever. If I picked something up, I’d drop it. I’ve been having trouble with the function of my hands for a while, and that worsened greatly.

However, even with these difficulties, my pain level was not anything like what I’ve read of others experiencing. MS is a painful disease, and I’ve pretty much become used to living in pain for many years. So, when these symptoms started, I initially figured “dang MS,” And now we know that’s not what it was. I wonder if my pain felt different than others because I am so used to living with and pushing through MS pain? Not that I want to sign up for pain, am just wondering.

As my GCA treatment started, I noticed things that were painful now are not, although the areas of my body that have MS pain still do. That’s normal. My hands are useless and only time will tell what is causing that.

A second question: Can one have PMR for a long time and just live with it until something hits the fan? In my case, in 2015 December I had urgent surgery for a 98% occlusion of a carotid artery. And, I swear I was never the same after that. I’d go to my MS neuro appointments and always say “everything hurts.” The neuro would tap here and there, squeeze a shoulder (ouch) and say ya MS is painful and perhaps you have Fibromyalgia too. So, I continued to push through the pain I was living with. It did not clearly become “something else” until this April’s fatigue and stiffness storm. I’ve been a beast since that 2015 surgery and since I have started prednisone, I get up in a totally better frame of mind now. I’ve been just plain rotten since 2015 and now I am not. The high dose prednisone is no great treat, but it is working on the GCA so I’ll take the side effects any day over what I had before starting on treatment.

Thanks to anyone who may have insight on my curious questions.

2

I had PMR for over 5 years without being on pred - not out of choice but because the doctors didn’t recognise it, not even a rheumatologist I saw who insisted my hand, foot and knee pain was OA, she could “feel it”. Whatever it was - it wasn’t OA, 13+ years later there is no sign of any with imaging. Which I will believe before “I can feel it”.

I had a lot of pain and was pretty disabled but I still worked, from home, went to the gym, as long as I could drive to the door, I could ski with a lot of preparation. It was the aquafit at the gym that kept me mobile at all. Then I had a flare and couldn’t move for some days - and shortly afterwards I was stopped driving for medical reasons, incorrectly as it happened, and that was when I really found out how bad I was. And it spurred me to find out what it was - what the doctors couldn’t work out, I did. It still took another 6 months before I got to see a rheumatologist and he agreed to give me 6 weeks pred to cover me on a trip to the USA. He was sure it was an inflammatory arthritis but the drug he wanted to use required monitoring, especially at the start and I was moving to Italy soon after. I took 15mg at 10.15am standing outside the pharmacy and shortly before 4pm I got up from the computer, walked down the stairs and made a cup of tea and walked back up carrying it. Something I hadn’t been able to do for months. Stairs meant crawling up on hands and knees.

Since then I have been pretty much pain-free - but I won’t compromise on dose. I take what I need to have good quality of life. Not everyone is like that - they are too scared of pred. And a lot of doctors push patients to get to too low a dose.

The pain varies and some patients are particularly sensitive, maybe some of us do deal with pain better because we’ve had a lot. Some people have what I call add-ons, such as myofascial pain syndrome, which don’t respond as well to pred and some people have OA and other problems, But I think the patients with severe pain on pred are either not on enough or they have other problems.

3

Hello, I have never experienced severe pain from my PMR. I have experienced severe pain from spinal stenosis causing sciatica pain. I now have moderate pain from chronic back pain for surgery to correct the spinal stenosis.My initial symptoms were discomfort in my upper arms and inability to raise my arms over my head. I had to change my hair style as I could no longer blow dry my hair. My thigh muscles felt weak, no strength to get up of couch, chairs etc. Needed help. My biggest complaint however was extreme and unrelenting fatigue. I could sleep 18 hours per day with no problem. I am 2 1/2 to 3 years into this PMR journey, all the time attempting to decrease the dosage.I have decreased from 20 to 15 mgm, but whenever I attempt to go lower, ( which I have been doing over the past year)my symptoms return and it seems to me they return with a vengeance.I have attempted to wait it out for up to 3 weeks to see if I would adjust to the lower dosage, and have only been going down by .05mg. I have recently decided that I am no longer going to try to decrease my dose. At 15 mg.. I have a pretty good quality of life, and I am tired of and getting depressed with not being able to do very much because of flare-ups. I really have no side effects that I am aware of from the prednisone. i have a bone density test this coming week. It has always been good in the past so hopefully there will be no change. I am 72 years old and do not want to wait for this to end before being able to resume my life, especially if it can last for up to 6 years. For myself I have not had any major health problems myself that might have initiated or predisposed me to it. I have had however in the last 15 years, 2 new knees, 1 new hip, back surgery, my husband had open heart surgery about 10 years ago. As well we had a custody battle with our grandsons mother, 7 years ago. I had pretty well raised him up until age 7.We were awarded custody, but it has to have been the most stressful period of my life. These days they talk about stress leading to many health problems. I am willling to accept the possibility of side effects from the prednisone later on if it gives me more time now to be a participant in life.

4

Eileenh, I firmly agree with you. Once I was on enough Prednisone to control my pain, I was back working to get in shape. I am still on 4 mg working out at the gym 3 days a week, preparing for next ski season. :slightly_smiling_face:

5

Hi Eileen,

Thank you for sharing your story. From my struggles with MS, one would think I’d very well understand the complexities of auto immune disorders. I think I am still working to believe I have added 2 more to my collection. It was a long process to be diagnosed with MS in my 20’s although it was as clear as could be once I chased it all down and put it together for the specialists.

Because of the disability of MS Ive been living a home based life for the last few years, and that probably kept my pain level down. when everything started to hurt, we were living the dream in our lake house. once the pain took off we sold that house and returned to our primary residence believing “dang Ms.” Then this April happened and I had something new… 2 things new

the worst part for me now is the loss of function in my hands, as its sewing and knitting, taking short walks with my walker, that have kept me occupied. although this is tough, i didnt have that far to fall. i want my simple life back!

I am glad u have your life back!
The high dose predn for GCA is a rough road as is thinking of the vascular implications my husband survived a dissecting aortic aneurysm at age 48

6

Thank you Carol. We sure are quite the lot here aren’t we?

Yes, the unrelenting fatigue… that I know. The fatigue that I have with MS has been labelled “crippling.” When it doubled in March/April and the stiffness and other symptoms began, I knew it was something other than MS.

I am a long way from even thinking about decreasing dose for PMR, as first I am on high dose Pred for the GCA. First things first.

Tonight my hands are hardly able to do anything at all, and this is my biggest loss. My hobbies of sewing, quilting and knitting are what have kept me content as my MS worsened. I know these hands are not going to come back for a long time and that is what really is the worst part. I can stand the fatigue, pain, etc. I cannot take losing my hands.

7

Angela: about two or three months into my PMR, my hands were swollen and painful. The problem went away after a few months. You might try icing them to bring down the swelling.

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Peggy,

Thank you for sharing with me your experience with your hands, it gives me great hope.

I definitely will start icing! And I believe i should take it easier in my hands, i am obviously upsetting them. On top of that we are having a very hot July and MS AND HEAT are enemies, so I have that going on too We do have central a/c, so I am protected from overheating. I have been a very tough MS warrior, pushing and pushing for years. It seems that may not be the way to get the PMR issues to settle down until I’ve been on treatment longer.

ANGELA

9

I fear not “up to 6 years” - half of patients required pred for up to 6 years! The rest needed even longer.
I agree - I need to live now, not spend years in pain hoping it will go away. You are a long time dead - OH has had cancer twice so every day is a bonus and I don’t want it to be worse than it need be. His long term adverse effects from chemo and radiotherapy are far worse then mine from pred but no-one told him he shouldn’t have them.

10

No, not pushing, a different P word - pacing! Multiple small doses of what you want to do with rests between works better.