Oh Happy Days!
Posted , 8 users are following.
Hi all
Having told my GP last week in no uncertain terms that I wasn't a hypochondriac with a bit of an ache and an overactive imagination, I had an urgent appointment with the rheumatologist yesterday. She is pretty certain that it is PMR, because I have classic symptoms, but said she couldn't be 100% certain because this complaint is so difficult to diagnose and my blood levels aren't raised. She also said this makes it much harder to get the steroid dose right so has given me a high dose steroid injection in my backside instead but I am not really sure why. This apparently lasts 3 months after which she will reassess the situation.
I had the injection 11am yesterday and the early signs are really encouraging as the aches and pains seem to be reducing by the hour so I am keeping my fingers crossed the improvement continues.
A lot of our discussion centred on whether I experienced stiffness first thing in the morning, which as we all know is a classic PMR symptom, (especially getting out of bed) to which my reply was that I have difficulty turning over in bed and moving because my muscles are extremely painful but she seemed to think that this wasn't the same as stiffness. Can anyone enlighten me on whether there is a difference between pain and stiffness and if so which gives you problems getting out of bed in the morning?
I am pleased to say that my depression :cry: of last week has now lifted and I am feeling much more positive so many thanks for all your support.
Bob :D
0 likes, 19 replies
Lizzie_Ellen
Posted
Great news! Sounds as though you may be getting somewhere. Haven't heard of a steroid injection lasting three months before, but then I'm not a Rheumatology Consultant! As regards to stiffness versus pain. That's a tough one and has got me thinking back to when I couldn't turn over in bed or hardly get out of bed. I would say that it was so painful it made it feel as though everything was stiff. I think the pain was preventing me from moving - is this making any sense Bob? I could barely walk in the morning but I'm sure it was pain mostly. I don't know, even I'm puzzled now! Stiff or painful, your symptoms seem to refect mine exactly, including nothing much showing up in my blood tests. I have to say that 3 months till your next appointment seems a very long time as my Consultant wanted to see me every two weeks, armed with a complete set of blood tests for the first couple of months. But everyone has different ways of working and I'm assuming that you will be able to make an emergency appointment with her if the symptoms start to return, which mine did for a few days before settling back to a very acceptable level. I'm sure there is someone in our group who has experience of the steroid injection and also several people who may have a more coherant explanation of pain v. stiffness Really pleased to hear that you're experiencing some relief at long last and your depression is being replaced by hope. Brilliant news.
Regards
Lizzie Ellen (the Saints supporter!!!)
MrsO-UK_Surrey
Posted
MrsO
mrs_k
Posted
Please read para 5, if no other para of the BSR Guidelines issued June 2009.
You can find these guidelines on the BSR website, the NHS website and www.pmr-gca-northeast.org.uk.
They really do enlighten you as they are written for Rheumatologists.
As for the difference between pain and stiffness, you tell me. I do not have pmr, but I do have a stiff knee in the morning which is painful.
Are you being stoical because you are a man?
Tills
Posted
I am so pleased for you that you have, at last, seen a consultant. Getting a proper diagnosis seems to be so difficult.
I am no expert but my experience is similar to yours.
My worst time was in bed when the pain seemed to be worse than any I had during the day and turning over was excruciating. In the morning, I was stiff. The stiffness wore off but the pain didn't.
My take on this is that I spend the night tensing my muscles so when I tried to get out of bed my body was aching with the strain and stress of muscle fatigue. This diminished as I moved about but the deep muscle pain was still there.
I do hope you are sorted out soon.
I am just off for an early morning visit to the GP before I go to work.
After two weeks on Prednisalone, I am a different person. I can't say I am completely free of all pain but I am 70% better which makes things bearable. I do find the cold weather makes things worse though!
It will be interesting to see what my GP says this morning becasue although I have the classic symptoms, my blood tests were normal.
I want a referral!!!!!!
Good luck Bob. You have suffered long enough and deserve to have a proper diagnosis and proper medication.
Mrs_G
Posted
Klosblue
Posted
I was given a steroid injection at my first appointment with the Rheumatologist which was on 4th Dec and I had an excellent response with my pain all but disappearing within several days. When the blood tests came back and PMR diagnosis was confirmed, I was started on Prednisolone (15mg daily) on 7th Jan. To cut a long story short, I was intolerant to the oral steroids (despite 3 different GP's telling me I had a virus!!) which fortunately my consultant recognised immediately on hearing the symptoms from my own GP, and I am now being treated by injection. I had my second one on 22nd Jan as my body was screaming in pain again and my GP has told me these will be given to me monthly initially then we'll \"play it be ear\". I would imagine that if they lasted for 3 months then I wouldn't be getting them monthly. I get 120mg dose of Depo Medrone (Methyl Prednisolone).
I hope you get a diagnosis soon Bob and wish you all the best.
Hope
Green_Granny
Posted
I've just been to see a new Dr. in our practise who specialises in rheumy stuff. As I've just gone up to 10 mg. pred. from 7.5 mg. and not felt any better, and as it's been my first real flare up it was a bit depressing. He has put me on 15 mg for 2 or 3 weeks, but reckons I don't respond very well to oral steroids. I took 4 months to get from 11mg to 8.5 mg. last year, then another 3 mths to get from 8.5 to 7.5 mg. It's not that I am allergic or anything, altho' I get the \"usual side effects\". So if I don't feel better after the larger dose he will try injections.
He's also going to do some blood tests to see if there's anything else going on, tho' he doesn't seem very keen on blood tests as a diagnostic tool for PMR or to help with the steroid dosage.
I also asked him about acupuncture which I've also brought up on this site. he's not against it but said it made more sense to wait and see what, if anything, else is going on, after the tests. OK by me.
Anyway the best of luck, Bob.
Green granny
Tills
Posted
Am I alone in thinking that steroids don't seem to work so well in this icy weather?
Tilly
Mrs_G
Posted
MrsO-UK_Surrey
Posted
It does sound as though the different GP you saw is taking a special interest and it's good to know that injections are available to you if you continue to take so long to do the 1mg drops. However, hopefully this time you will manage to reduce more successfully if the PMR starts to wane.
I do so agree with Tills and Mrs G that this cold weather is counter-productive to our condition....I've never before worn such thermals and thick sweaters as I've worn this winter and that's with the heating up high - Heaven knows what the bill's going to be like.....I think all PMR sufferers should be given extra fuel allowance!!!!!
Hope you start feeling better very soon, Green Granny - at least we've got this site to get it off our chests!
MrsO
Green_Granny
Posted
i've just bought a \"duvet coat\", on offer in a magazine at the weekend. So the weather probably will turn warm and I won't need it, but either way hopefully I shall be warmer.
I looked up steroid injections on the internet and they all seemed site specific e.g for frozen shoulders or sports injuries but I guess I might learn.
At least we're into February now, lovely if we could have a warm summer!
Youngest son, still living at home, seems to have swine flu so glad I've had the jab! Thanks again, green granny
sog
Posted
Regarding the 'pain/stiffness' I believe you can have both and they are very real. At my worst, apart from the pain of the muscles my wife had to put my socks on because I couldn't flex my knees and thighs enough to reach down.
At the moment everything is great - its almost as if nothing ever happened. I have a blood test next Wednesday and GP is hoping we can try a reduced dose (20mg at present) Will let you know the results.
I can only think that from what I have read here, in spite of the agony I had, I think my PMR has been almost mild compared to some people. Or maybe there is worse to come!
Alan
Bob_the_Builder
Posted
Once again, many thank's for all your posts that are so helpful and informative. The pain in my shoulders is refusing to go completely (which is a little worrying) but a lot of my aches and pains have gone and I just feel so much better in myself and feel like my life is starting to get back to normal.
Klosblue's comment regarding needing these injections monthly is a little worrying, after the consultant told me they work for 3 months, but knowledge is power so thanks Klosblue and I will monitor the situation closely. I really don't want to be back to square one in a month!
The discussion regarding stiffness and pain is very interesting and Lizzie sums it up nicely in her post. I believe we are all in pain which is why we have difficulty moving and appear stiff so I am not sure what the consultant was getting at but she seemed to think it was highly relevant to whether I have PMR or not. I am sure we can all relate to Sog's experience with difficulty putting on socks in the morning but again its more to do with the pain than stiffness per say.
Am I the only one who doesn't find the weather affects me?
Perhaps more worrying is that when I went out this evening in my car I got to the end of the road and couldn't remember where I was going and whether I had to turn left or right for about a minute. A sign of old age or what :?
Hope you all have a good one tomorrow.
Bob :D
Lizzie_Ellen
Posted
Great to hear you say that your life is starting to get back to normal. We can all empathize with that sentiment. I don't even know who I am sometimes, let alone where I am or where I'm going :? So I wouldn't worry too much about your lapse of memory. I think most people on this site with know what you're talking about. Brain wise, I have bright days and dull days and some very confused days but I think that's a combination of the PMR and the medication and at the moment I'm having mostly OK days. Regarding your shoulders, if its any consolation, my PMR started in my shoulders and they were the last part of me to respond to the steroids. Even now, when I feel I'm doing very well, my shoulders continue to ache, but just a gentle ache that I forget about most of the time. I think any illness will seek out your weak spot and after years of hockey, badminton and in recent years bowls, my shoulders have always been my weak spot so I'm not surprised that they suffered the most. I'm not sure if the weather has affected me or not - I'm off to Spain for two weeks this weekend (purely for medical research!) so it'll be interesting to see if the warmer weather helps. May your improvement continue at a pace and your built in GPS start working again :lol:
Regards
Lizzie Ellen
Guest
Posted
Great to hear there is a fellow bowler on this site. I am a complete addict and treasurer of the biggest club in the area but this PMR has all but ruined my indoor season and I don't hold out much hope for outdoors as well. I suppose I could always make the tea instead :x
Have a really great holiday.
Bob :D