Never a days illness, now this!!

Hallo again Margaretann and so sorry you are having such a difficult time. It really is much easier to be ill oneself than have the responsibility of looking after a difficult to help person. I don't know how I have the nerve to say that as I am one of the worst at accepting limitations graciously!

I have been a five star pain to my nearest and dearest but it did come to an end when I began to feel better. It really is very necessary that you get some pain relief as much for your sake as for Jim's.

[quote:b08e28397a]I dont know what medication to give him because nothing works only the steriods worked, and the docter took him off them, what do you all think? [/quote:b08e28397a]

This seems a terrible situation. What is this doctor going to say if, in six weeks time, Jim IS diagnosed with PMR? Could you ask to see a different doctor or is it a one -man Practice? I remember you said that Jim told the doctor that the steroids had not taken the pain away but surely he ( the Doc ) should be able to translate what patients say to him. He cannot just take it all literally esp. where men are concerned. Exoerience differs and some of us are luckier than others with the degree of pain relief. Perhaps Jim gave the wrong impression because he expected 100% relief and the steroids were stopped because the doctor thought they were having no effect. Here I read you saying that only the steroids worked.

Perhaps Jim gives the doctor as well as you a hard time ! Two men, both with short fuses, might not be too compatible and I get the impression that your doctor is not the most sympathetic. Is he your doctor, too? If so it might be possible to put the case for re-trying the steroids.

Keep coming back. We are all hoping to hear some better news.

Best wishes to you both. BettyE

Hi everyone hope your all doing ok Jim as you know was at his gp today for either a signing off cert or a longer sick time. His Docter is not letting him back to work until he sees the specialist so has given Jim a insurance cert for a futher 6wks,, his employer is not very happy with this ,[someone asked jims age he is 56yrs] his boss today is going to put him under his works docter, What does that mean? can this docter override what his own docter has said? and can he force Jim back to work even although hes in pain? he is wonse again worried about his job :? can they dismiss him on medical grounds, and if so what then, he is still very very depressed. 6Wks is a long time when you are waiting on it comming round. ok i am away to get some shut eye tonight, so will catch you later i hope God Bless you all MARGARETANN

Hello again Margaret Ann

Many firms use their own Doctors to get a second opinion as they have to know whether someone is fit to do the job they are employed to do Also used if people have lots of seperate periods of sick leave or if people are off long term

I had the impression Jim might be older which is why I suggested pension credits The other thing is both Lizzie Ellen and I saw a Rheumatologist privately it cost about £140 and your Dr can arrange it and normally I would say this would happpen within a week

When I had to be referred to a Rhematologist the waiting list was 3 months and I was in such pain I couldnt wait I cried even to turn over in bed in the ,mornings and was frightened to sit down in the day as I would struggle to get up again and that money was the best I ever spent !! I was skipping within a few days of taking the steroids !!

A note if you do this you can still have all your blood tests done on the NHS My blood test bills at the private hospital would have been £ 340 !!

Best wishes

Mrs G

Hello Margaretanne

The Works Dr is back-up for the firm and with the experience to be able to assess people on the firm's behalf as to whether for instance they are safely able or not to carry out the particular tasks for which they are employed. Sometimes they suggest doing a different task within the firm where this is possible. This is purely routine when people are having unusually long or many periods of sick leave.

I would definitely second the opinion of Mrs G and consider getting a private rheumatology appointment in the next few days and not sit out this next 6 weeks. During the time I waited for my appointment my condition deteriorated to such a stage where I was bedbound and being taken to hospital by ambulance and wheelchair added to which the consultant was unble to diagnose me. Months into this situation I sought the second opinion of a private consultant and he was adamant that if Rheumatoid Arthritis had been ruled out then I definitely had PMR.

Good luck!

MrsO

MargaretAnn

Don't know if this will be help or comfort but as ,I think, MrsK says \"Knowledge is power\"

Google sickness employment regulations dismissal uk and click on the 4th entry ( or any others that look as though they might be useful, of course.

I know this idea is not popular with Jim but I must repeat that he really ought to get support from his Union and ASAP. Good luck, BettyE

Hi Everyone got a question for you,,Can a Rheumatologist get it wrong? you will think i am been really silly, but a friend of a friend who i dont know very well, only now and then do i see her. her husband and all her family, and all off her friends believed that she had Polymyalgia Rheumatica, so her husband and herself went private, her appt was 3 months away.Her symptoms had died down a great deal when she went for her appt and was concerned about this. The Rheumatologist said it was not Polymyalgia Rheumatica, and has sent more blood tests away,Can he get it wrong,, this is getting me worried as some days Jims symptoms are worse than others?? some days he says he is pain free, although i dont believe him,So can the specialist be wrong have you ever heard off it? :? :? God Bless You All MARGARETANN

Basically any person can get anything wrong at times !!

Rheumatologists deal with a huge range of related illnesses my sister in law sees one reguarly for a rare illness (1 in 200,000) which means your muscles are weak rather than any pain and there are all the psorasis related arthritis as well

Jim might have something else but until he sees a Specialist he wont know He also might feel much better one day than another We all do and all of us on this forum and all the related organisations quite often have different symptoms to each other This bout of PMR I have is much different to the one I had before

Perhaps you should take Mrs Ks advice and contact your local PMR group in Dundee as they would know the local Rheumatologists The one I saw is very respected in his field but needed a personality bypass Complete lack of any social skills !!!!

Im sure all this worrying is detremental to your own health (Stress seems to affect my PMR very badly ) so it might help for you to have a chat with someone locally to put your mind at rest

Best wishes Mrs G

Margaretanne - of course, even the experts are human and can occasionally get it wrong. But I would say that in your friend's case, her rheumatologist is doing the right thing in further investigating and requesting more blood tests - he hasn't exactly got it wrong yet, has he? There are many arthritic conditions which can mimic the pains of PMR and the blood tests serve to rule out most of them before a diagnosis of PMR is reached.

As Mrs G has already said, we experience good and bad days with PMR and I guess this could apply whether or not we are being treated with steroids and on whether we have PMR either in a mild form or at its worst.

If you act on seeing a consultant now, I think this would relieve most of your worries - after all it is counter-productive to both your arthritic condition and that of Jim's to worry before the event!

Very best wishes

MrsO

Hi Margaretann,

Yes, you may find that a consultant rheumatologist thinks it is something else - the guy I saw seemed to want it to be something more complicated and nasty! However, one of the GPs in my practice, not the one I usually saw, was quite happy that the symptoms I complained of were those of PMR and the fact that they responded quickly to steroids (a lot of the pain and stiffness was gone within 24 hours, the rest improved over a longer period of time) was enough confirmation for her on the basis of what she has been taught by other rheumatologists so we have bypassed the consultant.

There ARE other forms of arthritis/rheumatism which have symptoms which are the same as some of those in PMR which is why they need to do what is called a \"differential diagnosis\" with X-rays and a whole range of blood tests. Once other things have been ruled out, a diagnosis of PMR is accepted by doctors and employers alike. As MrsG has said, there are loads and loads of diseases that look quite similar but have different causes so it may take a bitof time.

You have to remember, too, that the changes in the NHS about waiting times has meant that nowadays a lot of people go to their GP and demand to see a specialist because they have some back pain, for example, and they are not prepared to do the exercise or physiotherapy that would help it but seem to think that a specialist can give them a tablet and it will all be OK. The rheumatologists, in particular, have been overwhelmed with patients who did not really need to see a consultant and this means that those who do get a bit lost in the crowd. It also does not help if the patient is playing down their problem as Jim seems to have been doing. To some extent, it's understandable that a probable PMR patient does not receive the same sympathy as a patient with obvious rheumatoid arthritis - it's not right either so we have to keep our end up so to speak and make sure we are taken seriously. Many doctors also do not understand about the fact that in many jobs you only have a very limited amount of time off for sickness and may lose your job if you are unable to do it because of some ailment - or that someone who is self-employed only gets paid for the work they can actually do.

Jim needs to accept the assistance of all the professionals there - the union rep, the works doctor, the benefits office. They all know what's what and where to go - but have to be given the chance without him being stroppy with them.

Good luck,

EileenH

Hi hope everone is doing ok, Hi EileenH. You hit it right on the nose when you said my jim was stroppy, he does not listen to anyone he thinks he is always right :roll: and dosnt deserve all the help that you guys have given me on his behave, but i keep on trying and sometimes he listens.All your help i myself needed. To keep myself in the know, and by helping me, it has helped Jim, so some off it he listened thanks, He now has 6wks off work and the doc has put on his insurance line YET AGAIN neck and shoulder pain, so i am not suprised :roll: his employers has put him on to the works docter they want to see whats going on i would think. anyway thanks for your help. i hope by being honest with you, you will still continue to help me. GodBless MARGARETANN

take it all back, Jim was having a look at my computer and was very impressed when i told him how much you have all helped me.He then went on to read all off your postings there was a lot for him to get through and by the time he got to the end he was in tears, he couldent believe there was people like yourselfs willing to help others. So on his behalf a big thank you, ive never seen him like this to be so moved by reading all off your experiences. so keep up all off your good work i will be needing your guidence to help Jim, and my self. thankyou and GodBless all off you and will speak to you all soon. MARGARETANN

Hello again Margaretanne and welcome to you, too, Jim now that you are looking in to our wonderful forum as well.

Do hope that you are not suffering too much pain at present without the steroids, Jim, and that maybe without the stress and heavy physical activity of your job you are actually finding some relief. If you are suffering badly, then Ibuprofen should help to give you some relief to tide you over until your first rheumatology appointment.

If you contact the lady at the Tayside PMR Support Group that MrsK recommended, then, amongst other things, she will be able to tell you when the next meeting of the Group is taking place and you could both go along and share in personally with others' experiences as it so helps when one realises they are not alone with these illnesses.

Meanwhile, Jim, be alert to any signs of the PMR-linked GCA symptoms such as headaches, jaw pain or vision disturbances because if Jim is suffering from PMR then GCA is a real risk without the steroid treatment for the PMR.

Hope you're managing to give yourselves some special treats of something that you both enjoy doing, such as a meal out together perhaps, to help boost that morale, and some daily walks in the fresh air to release those feel-good endorphins - it really works.

Very best wishes to you both.

MrsO

Hallo MargaretAnn and Jim,

It's really good, Jim, that you have joined us personally.

There is no-one on here who has not had good reason to be grateful for the help and encouragement offered by contributors to this forum.

You can ask questions, report experiences, have a moan or a rant and, best of all, never feel alone. Keep coming back and the very best wishes to you and MargaretAnn. BettyE

Hello to you both

This site is such a great help and a shoulder to cry on sometimes When I had my first bout of PMR I sailed through of it as I had a great Dr who listens and gives you as much time as you need and as soon as I had the steroids I was fine

This time it has been quite different and Jan/Feb was a real low and I had to triple my steroids and felt the whole of the last years progress had gone in a day !! This site was then a great help to me and reading about others who had overcome this made me feel \"normal\" Quite often people who have no knowledge of PMR think because there arent normally visable signs as you look well you must be well !!

So keep reading and asking as many questions as you want as there is always someone ther to help

Best wishes

Mrs G

Hi everyone hope you are all well,? I am just sitting here after another exchange off words,with my husband Jim, and i realise i must have a pretty rock steady marrage as whatever jim throughs at me im still here for him and always will be.but all the mood swings that he is having is bound to put a strain on any marrage,yet here i am ,still here, what about the wifes or husbands that dont have the understanding nature that i and many more have, what happens then,, it could very easily wreck your whole life, so its more than living with pmr its understanding it too, learning how too keep your partner happy also ,, .live with this,, understanding this,,oh the list could go on and on.. so here i am ,girls still posting in the middle off the night,, will i ever change? anyway i am away to try and get some sleep, to recharge my batteries for tomorrow,, and start again. love to you all and GodBless MARGARETANN