How do we educate family and friends regarding PMR?

Good Morning Eileen.  It's 6:30 am here in the Northwest Territorries of Canada.  Because I'm in Canada it appears I cannot get access to the northeast of England Support Group.  I filled in the contact request and it was turned back because my phone number (a required field on the request) is invalid in the uk.    Similarly the package required to join the group is designed for uk residents.  Do you know if it's even possible for someone from Canada to join?

I've just remembered - I'm so sorry, I totally forgot - there was a problem with sending the DVD to the States at the start as there were quite a few people there who wanted it at the time and payment posed a problem. I've sent your message to "someone who knows" to ask. My response was just standard "this is available" - I never thought about that. 

What is available to you I think is a book written by someone else who works with the UK national PMR/GCA charity which you can get for Kindle from Amazon:

Polymyalgia rheumatica and giant cell arteritis: a survival guide.

It is her story and how it all affected her. There are bits about it I don't like and )in my opinion at least) some errors but it general it is a good portrayal of what we go through. When it comes in someone else's words and has been published it sometime hits home better - of course you need to get them to read it!

I'm also sending you a pm - so look out for it! Heaven knows how you see them nowadays!

Thanks Eileen.

I got the private message and will send an email.

I have a Kindle and will also have a look at the book you suggested.

Can't thank you enough for the support!

How strange ptolemy - we've had difficult explaining the stiffness to rheumys who are doing research - bless them though, they do accept we have pain! I had sort of all over low ache, especially after doing anything, but the worst pain I had was when touching a muscle. Having my BP taken was agonising and of course that led to some sarcastic comments about whinging, "it isn't that bad!". Excuse ME - I know what pain I have! Firm pressure on my feet and calves/achilles tendon area was also awful - I went to a Bowen therapist and when she did anything to my lower legs I squeaked loudly! She couldn't understand why.

But the looking well - that lasts as long as you have pred induced weight gain! No wrinkles on a balloon and the chubby, pink cheeks have a lot to answer for!

I guess some of us hide what we're feeling a little too much at times.  I don't want to be seen as a chronic complainer as it's very tiresome to have a person like that around. But it sure would be nice to have some one around who just understood and stepped in to say: "You need to take a break Hon, sit down and I'll make you a cup of tea...or a G&T"

Your thoughts resound with me Eileen.  Over the years I suffered with my legs I had comments about "low pain threshold", "you just need to get out and walk more"; "it's just morning arthritic pain, work it out", " you're not getting enough exercise".  While the lack of exercise was true to an extent, my leg muscles simply would not let me do very much. Soon after the leg problems developed I began going to the local pool 3 times a week.  I developed my own aquasize routine and did it faithfully. I think the pool trips may have helped hold back the disease to some extent.  When I had the meltdown at the beginning of January I had been away from the pool for a couple of months because of travel or other commitments. 

And you're right about the chubby checks.  My hair stylist said: "At least they hide the winkles".  What concerns me now is how many more wrinkles I'll have when all that nicely stretched skin on my face and neck settles back down!

I think my worst pain was the feeling of red hot pokers stuck into my deltoid muscles, it was agony to move my arms. Also a friend felt sorry for me and gave me a big kiss and a bear hug so I screamed in pain as she clutched my shoulders. I read somewhere it is equivalent to clutching someone with a broken arm. This freind daren't touch me know!

I'll take the G&T any day!

I too went to the gym daily to do aqua classes for the first 5 years - I had to change gyms as the one almost next door only had machines and a studio and they were things that quite quickly became downright impossible. I'd also gone to aerobics for older people - and the others who were a good 10+ years older than me could do it all! I'd been quite fir but suddenly nothing wanted to work! The days I had aqua in the morning were the best - even if I was tired! When I had my meltdown I had to give up the gym altogether as I was stopped from driving for another reason for nearly 6 months, totally unjustifiably as it turned out, but without a car it was impossible - if I couldn't drive there and park close I couldn't go anywhere.

I do have wrinkles now - but they aren't too bad. Nor do I have big baggy bingo wings of skin really. I must have lost weight slowly enough for my skin to shrink to fit ;-) - 2lb/month max. I have sort of crepey skin on my lower arms in the morning when I get up but it doesn't seen to last long after I have my 3 mugs of tea for beakfast!

Good grief! I am sure you are all psychic! I had a dreadful day yesterday, with really frightening chest, neck and face pain. I felt I could not burden my partner with too much moaning but I needn't have worried. He didn't appear to notice my uncharacteristic quietness and, no doubt, pained expression and said nothing. I worry all the time that if I talk about pmr more than once a week, he will get totally fed up with me. If I do try to talk about this to him, I burst into tears and can't speak! I honestly don't want to be treated like an invalid but a bit of loving and caring would make all the difference. Am I being unfair? Unfortunately, it was not long after we met that my health problems started in earnest. I sometimes wonder if he and his family think I just pretended to be well at first and 'got my claws into him' under false pretences! All this emotional stuff is a nightmare when added to the pain of pmr and spinal stenosis. Reading this forum has relly helped me, as my doctor does not seem to know anything about the various symtoms of pmr, other than what is on the general information on the 'patient' website. When I first got the chest, neck and face pain, I thought I was having a heart attack. It lasts anything from fifteen minutes to an hour at a time. Today I have, again, had to up my pred dose by one mg to 13 1/2 mgs. I took the lower dose for 2 wks but was just getting worse. Fingers crossed for next time. Sorry to be so moany today but am feeling pretty low and frustrated.

You have checked with your doctor about this pain haven't you? Any pain like that makes me very twitchy about GCA - like PMR it doesn't always present like the textbooks say! And I had something a bit like that when I was having an atrial fibrillation episode though I didn't realise it until it was discovered and treated and I stopped having them - you don't know what you've got til it's gone! It was a strange sort of tightness in my upper chest and into my throat and when it was really bad my head felt peculiar too. If it went on long I felt sick and dizzy and if I was standing would have fainted.

No, you aren't being unfair in wanting a bit of a cuddle and sympathy - I know just where you are as my husband is pretty much high functioning Aspergers! I takes a LONG time to get through to him how ill I may be feeling. When I was in hospital with a nastily broken leg he just sort of stood there and when I was in for heart problems 2 years ago he insisted on coming to every visiting time and then just sat there, not talking. My daughter said he was absolutely paralytic with anxiety but never showed his concern to me. But he is a dying duck when there is something hurting!

Hi Eileen. Thank you for your swift response. I am seeing my doctor on Monday and will definately tell her about these pains. They start off with feeling like the worst indigestion pain ever and then move slowly up through the side of my face (including teeth). It seems to help if I change position and sit upright and breath slowly (difficult when you think you are about to collapse)!

 Going back to other halves, your'es sounds just like mine! I think men feel they will make you feel worse if they show their anxiety. Either that, or they simply don't know what to say or do, so they say and do nothing and hope it will go away! Which, of course it does, albeit temporarily. And yes, if he so much as has a sneeze, I,m expected to be nurse, mum and concerned lover all rolled into one! Thank heavens for their sake we love them eh?! On the plus side, knowing I won't get much sympathy, does help me to keep going and not give in (too often) to self pity.

What are you on besides pred? And do they tend to be more at a specific time of day? How long have you had them - it sounds most unpleasant!

As well as pred, I'm taking tramadol (for pain caused by the stenosis, blood pressure tabs, eye drops and Daktarin gel (for oral thrush).

The pains come at various times of the day or night (they have woken me up several times). They started just prior to my pmr diagnosis in January.

Hi Debbie.  Men!!  I know my dear hubby of 43 years this month worries and is concerned about my condition; however, he seems unable to translate it into loving care and attention.  It's simply not in him.  Like you, I talk a lot about PMR and so far he is willing to listen.  This condition comes with such a huge munber of complex issues it's difficult for those of us dealing with it to come to grips with everything, if we ever do.  So, it's pretty hard for the ones we love to truly understand what we've going through. My hubby will say he just doesn't understand, although I know he's trying.  And, he'll often pose a question or two that will make me rethink how I'm interpreting things. However, I remain the chief cook and bottle washer, wife, lover and confidant and often feel very alone.  If I really think about it things are really no different in our relationship than they've been for the last 42 years!  He loves me, he's patiently letting me make decisions with my health practitioner, and I know he's scared.  He's just not my Mom...that's who I really need.

Hmm - nothing there to be suspicious about really, I'd wondered if you were on alendronic acid or omeprazole, both of which can cause strange side effects. 

The cardiologist here is confident that it is something to do with damage due to the autoimmune disorder that has led to the atrial fibrillation. It got awfully bad when I was treated with iv valium for severe back muscle problems but had been there all the time I had had PMR before diagnosis - something I only realised once it was dealt with! It had been getting worse though and the iv valium was obviously just the final straw. I would wake at night feeling strange, almost as if I couldn't breathe or sore as if I had a really bad chest infection. Once it was sorted out I remembered my mother telling me once she had had a strange day where she felt a bit like that for a lot of the day but it passed and she didn't think about it again - until she had heart trouble and the doctors told her she had had a heart attack some years before. It must have been that day. Definitely a "Please check this out properly" request I think.

Don't think my mum would have been much help ;-) - she was very much a "get on with it" sort of person. And yes, I'm not really expecting OH to change the habits of a 43 year partnership either! I just gave up as much of the head cook and bottle washer tasks as I could get away with - if he doesn't like it he can lump it or get a cleaner!

 You're right Eileen.  Although I'm holding on to the chief cook part.  I'm doing my darndest to keep the weight off that I lost in the early stages of treatment so I've got us both eating a high protein and fiber, low fat and sugar diet, with healthy carbs.  He seems to be lumping that OK.

Oh no - I end up preparing 2 meals so I eat like you - he eats schnitzel and chips, steak and chips, chicken and chips - you get my drift! He has recently started to eat the odd lettuce leaf... He survived cncer 20 years ago - so reckons he can eat what he wants, he can only die once. Charming ;-)

Hello Debbie - I did experience a bout of chest pain during my PMR/GCA/steroid days but mine felt like muscle pain which made it difficult to move so I assumed that the inflammation of PMR had affected my chest muscles.

As you have been suffering from this pain even before diagnosis, have you investigated whether your other tablets could be to blame, such as those for blood pressure?  Also, if you are taking any herbal supplements, these should all be checked out with the pharmacist for compatibility with all your other medicines.  With the length of time you have been suffering, I'm surprised that your GP hasn't investigated something as potentially serious as chest pain before now.  It sounds very uncomfortable and I do hope you get to the bottom of it soon.  Meanwhile, you could try taking a little lemon juice in warm water before your main meals, plus a teaspoonful of Manuka honey daily in case it is a problem with your digestion - they can both help with that.

Hi Mrs O

I am assuming that these pains are part of my pmr. They started at the same time as my arm/shoulder/back pain. I also had the muscular chest pain at this time which made it difficult to breath in but happily this subsided when I started the pred.  I was on tramadol at the time (I had already been on these for two years at the time) but not any other medication. I don't take any regular herbal remedies so that's not it. I love hot honey and lemon so I will definitely try that from tonight.Thank you for your advice and concern. It is very much appreciated. I will post what the doctor says on Monday.