Aching arms and wrists

Thank you for the great post. Too bad the Doctors don't read these posts.

Carol, it is really nice to read your comments, and know that others out there are experiencing the same as I am,I must admit that when I started on the preds last July, within a few hours I was like a different person,I was able to do things around the home,someting I had been putting off because of the aches and pain,Yes, I have put on weight,and my face is rounder,but I became quite engergetic and not like I am feeling now. as an example, I used to find ironing very theraputic, now I just cant be bothered, and make excuses for not doing it.

I also suffer with COPD, which is under  control with medication which is working. I have regular check ups. However with PMR the checkups have never been consistant, only if I ask for them I told my GP that my achy arms have returned, and was told that this is because of my reducing of the steroids, and if that bad try taking paracetamol, so if this is the case, why was I told to go on steroids in the first place, could have avoided weight gain,and withdrawal aches, seems I am back to square one, and on top of all this now being told you dont have PMR as you dont get pain with PMR,  Fibromyalgia more like it, but nothing offered in the way of help

If any medic tells anyone that they don't have pain with PMR, avoid them with a bargepole and ask for referral to someone who knows what they're talking about.   It would mean that the majority of us have been wrongly diagnosed.  Download a copy of the British Society Guidelines for the Management of PMR and put it in front of any such medic - it cites pain as one of the symptoms and that PMR can last from 1-3 years and longer in some patients.

Thank you for your reply, I am sure,in fact more than sure that you do get pain with PMR,,,the point us that,I am really fed up with getting fobbed off,The Rheumi said that because I did not experience severe pain when I started reducing the Meds, that he knew /knows that I do not have PMR. He told me in Feb that I would have  pain like I have never had in my life,,,,and was quite surprised when I saw him lasr week, that I did not have the sever pain as he described, I told him that I have aches in my arms which do restrict me,  and are painful..carriyng things,and he said, he was right about me not having PMR bur Fib and the neurolist was wrong with her diagnosis, He  Kept telling me he was the expert and the others they dont know,,,,,

I can only lay on by back in bed, cant lay on my side as my arms are painfuk,,,, etc.

He really doesn't know what he is talking about.  For a rheumy to scare a patient by saying that when they reduce the steroids they will experience pain like they have never had in their life is unprofessional and unbelievable.  Yes some patients can experience a certain amount of steroid withdrawal pain when reducing but others don't experience any pain at all, especially when they reduce the dose in very small decrements.  Of course when they are told to reduce in too large amounts then pain as severe as pre-diagnosis and treatment can come back to bite.

If you can remember at which dose you last felt comfortable, then if it were me I would return there for a few days - if your pains improve, then you will have an answer. 

I couldn't agree more Nefret - it is taking me far longer to read anything.

Moderators - I assume it is too late to do anything but this format STINKS! You just about killed this group a couple of years ago - now you are having another go. It is an absolute pain having to reply to specific people when you want to join in a discussion.

New improved my foot!

Good morning,

I completely agree with you.

Is there anywhere on this site where people can join as a group, and then anyone can join in discussions?

Definitely something wrong with the way that it is at the moment!!

Hi Eileen/Nefret/muirkelsi,

The reason the forums were changed to this style with nested comments was because of the way the conversations sometimes flowed. A lot of the threads in the forums have hundreds if not thousands of replies (not necessarily PMR) as users keep posting in the same discussions rather than starting a new discussion. This means that in the middle of a discussion someone would ask something else that took the initial discussion down a different route. If there were several posts after this and someone wanted to reply to the post for example, 10 posts earlier, the actual reply was "out of place". Having the nested comments allows for "sub-discussions" within the main thread and we have had postive feedback about this.

As there was no general "Reply" button at the bottom of each page this was causing confusion and the thought you had to reply to an individual user to join in the discussion which was not the case. The way it was you could have replied to the initial post at the top of the page to put your comment in the main thread (and still can). Due to feedback there was a release yesterday which has reinstated the "Reply to xxx's discussion" at the bottom of the page ("Reply to muirkelsi's discussion" on this page for example). This will take you to the reply box at the top of the page but will put your reply at the end of the thread as it did previously. If you need to view the last post while typing your reply, you can sort by "Latest" and the last reply in the main thread will be under the reply box.

Sorting by "Latest" will only sort the main thread replies by reverse date order as it always has. The nested comments under the main replies will always be in time/date order, oldest first.

We have also added a "Start your own discussion" button to try and encourage users to post separately rather than keep posting in the same discussion.

Regarding taking longer to read - there is the Notification link in the user panel at the top right. This contains links to all replies etc as you receive in your emails which will take you directly to each comment. As part of the release yeterday there is a page in your profile here https://patient.info/forums/me/notifications which lists all of these.

I hope this helps and as Philip has said I am feeding back all comments about the site good or bad. I will be writing a guide to using the forums when I get time but as I always say, if any user has any issues or needs to ask any questions please use the Message facility to let me know directly or post in here https://patient.info/forums/discuss/new-style-forums-196496 I will be updating that discussion with details of other things in the release yesterday. There will be another release, probably this afternoon, which will fix some issues we have noticed over the last few days.

I will remove this post and the few in this nested thread once I have updated the discussion linked above so this discussion is back on topic.

Regards,

Alan

Emis Moderator

 

He did not offer anything for Fibbromyalgia  except pain killers, which he told me would not work,unless I took ones that would sedate me.

From the first consulatation I had with him,I did not like his  attutude,as I have a hearing problem, my Husband came with me, and he too was gobsmacked as to how this guy spoke,,,,I was going to cancel the appointment that I had on the 13th of May with him, but we had some family problems,and I never got round to it,anyway I wanted to see if my ESR has risen, which it had...because of the reduction, 

What I did not like this time, was his Tutting when I asked him to repeat something to me, and him saying, obviously you had not been listening to me first time, as I would not have to repeat to you,

I have to say that I too deal with the public, and yes sometimes it can be hard, but I am never rude to them....and if I have to repeat or explain something again to them,I just do.

 

From across the pond with some humor, is this Doc Martin, without the diagnostic abilities. Iknow you're looking for good medical advice and frustrated, you previously said you were going to another Dr. good luck there

I do appreciate that in many cases it helps - but it certainly doesn't help us oldies who are used to a conversation. Yes, I know you get to the comment from the email - but you can't then see all comments since the last timeyou said something. I can't explain why I don't like it without spending half an hour writing and I have better things to do with my time. It is just downright complicated - and finding the other comments before making a reply is often essential to avoid repeating yourself or not making sense. We have replied to earlier comments by naming the person and it worked well. But no doubt the few have to suffer for the perceived greater good. 

Nah - it's House we need! Apparently he has saved a few lives - all his cases are basedon real  life case studies...

Has your doctor considered you may have sero-negative RA or another arthritis? PMR and late-onset RA are very very similar. What we call PMR is more accurately a syndrome of pain and stiffness - one form responds dramatically to 15 or 20 mg of pred and when a higher dose is used it confuses the issue as that high a dose works in other things too. If you reduce too fast (i.e. in too large steps at a time) you can also develop pain that is similar - it's a foul trick of steroid withdrawal to take the form of the original illness. If it is PMR then cymbalta and lyrica are unlikely to help either. If you have pain at 27mg it either isn't pred-responsive PMR or you are reducing in too big steps.