Lack of understanding by friends

Bones, joints and muscles
1

First some background. I am 75 years old and I initially started experiencing PMR toward the end of December, 2017 and was diagnosed in January of 2018. I was started on 15mg/day of pred but after three days I had a panic attack that caused me to immediately reduce the dose to 7.5. I'm currently at 6mg of pred after vacillating between 5 and 6mg. My doctor (an very good internist) prefers that I stay below 7.5mg--what she calls replacement value--in order to avoid as much as possible the deleterious side effects of pred. This dose does not completely relieve me of pain and stiffness in the morning but it is not terrible, and within about five hours of taking the pred first thing in the morning I can feel relief and by mid-evening I'm really not in too bad shape. So this is the pattern that I'm assuming many of you might be familiar with.

And now to my real complaint. I live alone and it has been very difficult dealing with this disease under that circumstance, especially early on in the disease process with no support. My friends have never heard of this disease and tend to treat me as if I'm the same old person I always was before the onset of this condition which, as you all know, I am not. When I tell my friends that I have muscle pain and stiffness they tend to analogize this to transitory muscle pain they have experienced and offer all kinds of well-meaning but irrelevant advice. So I guess I'm complaining here because I feel alone with this disease with no support from people who otherwise, if I had a more obvious medical condition, would be there for me. It is a tough place to be at 75 and I just hope the PMR might relent so I might experience a few more years without it before I'm dead.

(By-the-way, I very grateful to have found this support group. I'm located in the U.S. and I could not find a support group here. I live in Atlanta, Georgia and I'd love to find a face-to-face support group here. I've looked and have yet to find one.)

2

From an understanding PMR patient!  Today, I thought of writing the group and ask if anyone has ever felt lonely with this disease.  

Due to another unfortunate flare, my husband went to a long awaited, once a year event we'd been planning for a long time -  alone.  I was barely able to walk and even with the 10mg prednisone, not a lot of relief, today.  I'm sure I'll need to go up, but don't want to rush it and want to see if a couple days quiet rest helps, first.  Life has been too hectic and way too stressful.

Non PMR people really don't have an understanding of the stiffness, the pain, the frustration this disease gifts.  

Everyone has their own personal disease references.

The doctors have a hard enough time, and from a lot of research, PMR is fairly widespread.  To have never heard about it before and find out how many people suffer is a big surprise.

this disease really can clip ones wings and isolation can be a big problem,  Getting outside to do simple gardening, simple daily chores is no easy process.  I'm closing in on 71 and was a very active teacher with many hobbies and activities to include traveling.  This was not the retirement that was planned.  

Meanwhile  this group does offer good ideas and support. Thank you!

Are there good ideas to remedy the isolation?  It is hot as blazes where I live and the heat is not helping one bit.

That leaves even sitting on the porch for a while - out.  This, too, will pass.  

Better days ARE on the horizon.  

One thing I've been doing is to make very sure that my vitamins are high priority.  Have been reading about taking vitamin D and B vitamins faithfully.  My tests were low in both.  

Looking forward to hearing how others deal with this problem.

MariGrace

 

3

It's important to take enough pred to make a difference.  If you still have pain and stiffness there's not much point is there?  It only took me six months to reduce,carefully, from 15 mg to 7 mg, and I did not suffer the same pain you say you do.  Pred has made all the difference.  I'm not, by any means, completely painfree,and there are other issues as well (osteoarthritis) but I do well.  I think both you and MariGrace need to accept that a slightly higher dose of pred might make all the difference to you.  From there a very slow taper will enable you to get even lower than you are now, and with a minimum of discomfort.  

It is a very lonely disease, that I do agree with.  There don't seem to be any support groups in North America (i'm in Canada).  I think we are "geographically challenged" and it's too hard for us to find one another in person.  In the past three years on this and the HealthUnlocked forum I feel I have found a group of virtual friends and it really does help.  So, welcome to the club no one wants to join.  

Andrew, tell your friends what you've told us.  Say if you had a broken leg they'd understand, and your disease is just as disabling as something like that.  It is an invisible disease, but it exists all the same, just like a headache is real and debilitating while it lasts, but no one can see it.  Pred is your painkiller, use it wisely and it will be your friend. 

4

Andrew, I am an 80 years young male living in NM. My Rheumy and I don't agree but I feel life is too short to live in pain. So I am on 7 mg tapering to 6.5 on DSNS 52 day taper. But I am PMR pain free and have been for almost a year. I taught skiing last winter and currently ride a bicycle 70-75 miles a week up and down our mountain roads. I sorry to hear that you have join our PMR club, good luck on your PMR journey. Try to stay positive and smile. Smiling ☺️

5

I am sorry to read that you are having difficulty with the side effects of Pred. As Anhaga has mentioned PMR is invisible and we look well so people make assumptions. A fracture would gain much sympathyand is short term but we don't have that. One     of the many advantages of this           forum is the support from other     countries. If you are awake at          night you can post and someone   is awake and likely to answer. I'm   in Scotland and happen to be up     early. Others will be along later. I   found it difficult to pace myself  at first but the body dictates. I am  now at 2mgs with one flare near  the beginning. It is over 3 years since diagnosis. I remember at the beginning and for some time thinking I can't cope with not being able to do much between breaks for rests. I have now almost got my life back though if I overdo it my body tells me. Men usually fare better than women in their recovery so you may be doing more sooner. It's important to readjust your lifestyle and rest more but it will get better. I don't know what to suggest re increasing Pred to control the pain versus the side effects. I had a number of side effects early on but most of them settled as I reduced the Pred. There will be others more knowledgable along  soon to advise. You are not alone. There are lots of us here to empathise. 

6

Hi Andrew, I very much understand your complaint, I too, as others will have too experienced others lack of support, my own family don't offer any support at all, except my sister.

I am still working and what I find very interesting is my boss who has a bad back is happy for me to do the heavy lifting, which is so painful for me.

I have been so very lonely with this too, and have found this forum so helpful, with understanding and advice.

Everyone does expect me to carry on as nothing is wrong, I have realized that it is because PMR can't be seen.

You won't be alone here!

7

Hi Andrew, I'm so sorry you're part of this club but it's a great club if you have to be here! I agree with the others that you should really look at increasing your dose of pred! If you get relief at 15mgs and reduce slowly you'll keep the benefits of the dose plus still be on low enough dose to not get any of the' bad' side effects. It's a very difficult disease to deal with, you definitely get the oh you look great, are you sure there's actually something wrong with you, kind of look!! And as we're so scattered around the globe, its difficult to find anyone close by who has it. I do feel though, if you increase your dose, you will feel better and with pacing will be better able to handle the PMR. Best of luck on your journey😊

8

As a PMR sufferer for the past five years I can emphasise with the feeling of loneliness. I also have to care 24/7 for a husband with advanced primary progressive multiple sclerosis.

He gets many benefits due to his condition but no physical help from anyone. I also suffer from arthritis and recently diabetes brought on by prednisolone. At least now with the diabetes I get my feet looked after regularly! 

It is a very sad state of affairs that anyone should have to suffer such a condition without help. I haven’t even been referred to a rheumatologist once in 5 years. Just given the brush off and the bloody prednisolone which I call prednis alone. 

Oh well they say it might remit within six years! I had another rare autoimmune condition for eight years before they found a medication for it. 

I had a very bad choking incident last Friday resulting in intercostal muscle damage which was so painful I was convinced I was having a heart attack.

I was alone because no one could hear me in the night and I had no voice or strength to get to any help.

I have spent the past three days on high dose codeine  three times a day. No other meds at all... not even Pred.  Sleeping loads and pain free at last.  Trouble is I don’t want to wake up!

9

It's mostly all been said by others and I add my sympathy and welcome to theirs.

Yes, Pred. has side effects as do most drugs but it's the only one that controls PMR pain so what are we supposed to do?  We do seem to vary with our responses so I always feel indignant that so many medics have this knee jerk "must reduce as fast as possible" reaction. I would like to ask them about the long term effects of uncontrolled inflammation and pain and how they compare with steroids.

I am very interested in the panic attack that precipitated the fast reduction. One of my adverse reactions was an intolerable over the top hyper feeling. I didn't describe it as a panic attack at the time and would not know how they are defined. I just told my GP that I couldn't live with being so wound up. His, at the time, unusual suggestion was to try taking the Pred. at night. " Perhaps you'll sleep through the hyper", he said.  It worked. I was taking steroids for five years after that,  adjusting the dose to suit the pain. I have now been PMR "free" for almost five years and the only long term effect has been fragile skin but that could just as well be due to age.        ( I'm 86 ).

As others have said, your friends need educating. Show them some of the entries on this forum.

Have a look at the links on the home page of this forum. Lots of well-informed information there that should convince them you are not a hypochondriac.

We may only be virtual friends but we have all benefited immensely from " knowing" each other.

10

To add to what Betty has said - trying taking your pred at night may also make a big difference to how much of the day you have to do something. The optimum time to take the pred to reduce the morning stiffness is 2am - and then the new dose of inflammatory substances shed in the body at about 4.30am never gets a hold and cannot cause the pain and stiffness. Since it takes 5 hours for you to get an effect it might work well for you and is worth trying I think.

As for F2F groups - they only happen when someone takes the initiative and looks around for other people. After all, 2 people is the start of a group - and them meeting for coffee somewhere may grow. Church groups, over 55 housing schemes and, obviously, rheumatologist's offices are the sort of place you could ask to "advertise" for others of like mind. The fact that America in general is a very spread out place shouldn't make a massive difference if you have a reasonable sized local town - PMR is the most common cause of rheumatica problems in over 60s so finding another few people shouldn't be impossible.

11

Can you get a doctors note indicating that you can't do the heavy lifting alone, if at all?  

12

If the codeine is working better than the prednisone should your doctor be questioning whether you have PMR any more?

13

Always make me smile when I read Michdonn’s comments because of his tagline and I realize how lucky we are to have this forum.

14

I am so sorry to hear that you as well as myself feel isolated by this invisible disease. I sometimes have thought that if only others that I know could feel what I'm feeling for five minutes they would not be so indifferent to this condition. Perhaps you need to show your boss and members of your family some of the medical literature describing the pain and discomfort brought about by this disease to give them a better understanding. Your boss strikes me as a particularly strange problem as he has back pain which I would think would make him more empathetic toward you as his pain can't be seen either. Keep up the good fight. Try to stay positive if you can and remember we are all in this together and at least here there is understanding.

15

A very good suggestion which I failed to bring up in my reply. I'm sure margot34956 will appreciate it.

16

My heart truly goes out to you. I wish I could offer words of advice that might relieve your burden. In this life I guess we just have to play the cards we are dealt even if it is a bad hand, but I understand sometimes it takes all the strength you can muster to carry on. I've reached the conclusion in my old age that life is basically luck both good and bad. Again, I wish you the strength to carry on, all the while knowing that the PMR may go into remission at some point.

17

Thank you BettyE for taking the time to respond. What I described as a panic attack at the 15mg dose of pred taken over three days was uncontrollable anxiety like I just wanted to jump out of my skin. As I live alone and I did not want to be alone while experiencing this mental state, I got in my car and drove over to the house of my nearest friends. This was the very first dosing regimen my doctor prescribed after my initial diagnosis and I cut it in half immediately without my doctor's consent. I've been below the 7.5mg threshold ever since (currently at 6mg) and my condition has improved but ever so gradually. My stiffness is most pronounced first thing in the morning but by night, say, after 7 PM it is not bad at all. I do all my chores at the end of day.  My doctor does not want my to go above the 7.5mg dose because of the increased likelihood of long-term side effects (osteoporosis, glaucoma, diabetes,etc.) which scare me sufficiently that I'm willing to deal with the discomfort (more stiffness than actual pain) rather than risking any of these. I guess everyone makes their own choice in these matters: pain/stiffness vs. side effects. I am however, starting today, going to take a split dose, 3mg pred in the morning and 3mg before I go to bed and see if that relieves some of the initial morning stiffness.

By-the-way, at 86 you sound sharp as a tack. I hope, should I reach 86, that I'm as mentally alert as you apparently are. Also, glad to hear that you have your PMR under control for such an extended period of time. That is a blessing. Thank you again for responding.

18

Hello Andrew - I'm new to this forum too, and I'm also new to PMR - I just started taking pred yesterday. The illness and treatment are both a steep learning curve for me. Like you, I'd rather have a low dose of pred and some discomfort, rather than a high dose of pred and the higher risk of side effects... but I do realise I could change my mind by tomorrow! I'm all at sixes and sevens at the moment, trying to take it all in! 

Sorry you are feeling isolated by your friends' reaction to PMR. The Arthritis Research UK website has a very good concise description of PMR - perhaps you should print it out and give them a copy! 

https://www.arthritisresearchuk.org/arthritis-information/conditions/polymyalgia-rheumatica/symptoms.aspx

19

Interesting that you should mention taking the pred at night in that as of today I'm starting a new dosing regimen, 3mg pred in the morning and 3 before bedtime. If that doesn't help I'll try the whole 6mg at bedtime though that may leave me more exposed later in the day. Have no answer to that. Also, I'll have no problem taking the pred at 2am in the morning as this is the time I usually go to bed anyway. Additionally, I suffer from early-awakening insomnia so taking the pred in the middle of my sleep cycle is not a problem, if that would be more beneficial.

Thank you for your suggestions regarding meeting other with PMR F2F. I do live in a large city (Atlanta, Georgia - metro pop. 5,789,700) though it is very geographically spread out like Los Angeles, CA. I was thinking of start a Meetup.com (https://www.meetup.com/) group for this condition and see if anybody bites. Thank you for your advice and interest. I look forward to being a member of this group while I'm dealing with this affliction.

20

You have to be very careful about accepting some pain in exchange for a lower dose of pred. If you are not taking enough pred to mop up all the new daily dose of inflammation then, like a dripping tap into a bucket the inflammation may eventually build up until you are back in the same state as you were intitially and requiring a much higher dose to manage it. If you end up allowing yourself to get into a yoyo situation with the dose it can become increasingly difficult to get it under control.

and actually - at these levels, the side effects are minimal:

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

And if you want an article that expresses what PMR does to us try Helen Twohig's work:

https://healthunlocked.com/pmrgcauk/posts/134348848/i-suddenly-felt-id-aged-helen-twohigs-paper-about-pmr