Lack of understanding by friends

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

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. 

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 ??

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. 

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!