Never a days illness, now this!!

Hi everyone its Margaretann again i have just one question,When Jim goes to see the rheumatologist what happens if he doesnt have the symtoms when he attends his appointment , will he think that there is nothing wrong with him, or is there another way he can tell that he has this condition, or does he go by Jims explamation, how does he make his diagnoses i am so afraid that he could be unlucky, [ no symtoms nothing wrong ]what do you think? let me know god bless you all

MARGARETANN :?

Hello Margaret Ann

Others will tell you what happenned to them and my initial appointment was in 2002 so its a while ago but I was asked lots of questions about health history as things like really bad doses of flu shingles accidents trauma do seem to trigger PMR in some people I was examined and I think I had 17 blood tests to rule out other things If Jims pain has returned after coming off the steroids that would be another indication it could be PMR The consultant he sees will only deal with people with arthritic and rheumatological complaints so he knows what to look for

You havent ( I dont think) mentioned Jim having blood tests with the Dr ??

I think you would find all of us were given them by our Drs to see if we had raised inflamtory rates Not everyone does with PMR but most of do

Try not to worry before it all happens Sometimes you have to help yourself and be persistant in these matters but I am sure Jim will get the right treatment in the end

Best wishes Mrs G

Hi its Margaretann again

Jim is still off work the last insurance line the docter gave jim was for a month, so he has another 10days then he will have to go back for a signing off line or another insurance line, not quite sureot very good at explainjng what as he is still in pain. But jim seems to think it will be ok to return. The reason im posting you today is he has had a letter from his imployers to go in for an interview on Tuesday to discuss his sick time off as shoulder pain is not enough information for his sickness time off,he can take a union rep with him if he wants.he has only been off work 6weeks in total and has had no sickness record in all the years he has worked there.he refuses to take a union rep with him and i am going out off my mind with the worry as he is not very good at explaining himself i said i would print off some imformation for him to take into his work explaining about polymyalgia rheumatica and olso he has to tell them he is waiting on word about an appointment with a rhumatologist,which im told could take weeks, he has made up his mind to return to work even although he is not fit to return he feels forced to go back, can he lose his job his docter wont even put poly?ect on his insurance line, shoulder pain. my only hope is i think is me getting all the information i can about this condition and for jim to present it to him. and hope he doesnt say yes docter yes docter three bags full docter as he is guilty in the past.Ihope this is going to work out because he cant afford to retire at the moment, not enough income to survive on. Thanks for listening to me and all my moans i will keep you posted. god bless you all MARGARETANN X

Hi Margaretann,

Men!!!! I do sympathise with you about your slightly pig-headed husband! Whilst I'm fairly sure this interview is the standard response to someone who has been off work for some time, please do try and persuade him to take his union rep with him - that's what they are for, to help you know your rights and make sure the employer isn't trying it on. And to provide a witness at a later stage if it is required.

Unfortunately, nowadays the fact you have never been ill before has little bearing if you do end up with a long time off (and that often means more than 3 weeks - even with a broken leg for a person who stands or walks for their work!) although one long time off is seen as better than repeated shorter sicknesses. It's a sad reflection on a society where an idea has developed that you are \"entitled\" to add sick leave to your annual leave, to use it to provide child care when your babysitter is not available or be off on a Monday because you spent too much time in the pub on Sunday. And in introducing regulations to deal with the shirkers, the honest ones are caught in the trap too.

My daughter had a similar interview in the ambulance service because she had been off 3 times over a month over Christmas and New Year. She had had a chest infection and a really severe asthma attack that wasn't caught quickly and treated aggressively enough. Because she thought people would accuse her of conveniently being sick for Christmas(she'd offered to work because we live abroad and she'd just split with her partner of 10 years) she went back and then was off again, had to go back to do her college stint and then was too ill to go back to the road. Had she just stayed off for 4 or 5 weeks it wouldn't have been a problem. Her sister also has asthma and when it was really bad Occupational Health had her classified as having a chronic condition so she is, in fact, allowed more leeway - since then she's been off once with a mega gastric flu and you can't go to a hospital ward (she's a nurse) with D&V!!!

Part of the problem is that your GP probably hasn't a clue what physical work involves and how important it is for the employer to be convinced that someone is not able - so the union rep should be involved. There is, after all, a big difference between \"not able\" and \"not willing\". If he feels he is being forced to go back he 1) needs to stop prejudging the employer - they need to know what's going on - so he doesn't get defensive and/or stroppy, and 2) he needs the rep with him to make sure he isn't forced to go back or, if he's offered redundancy at some point, that he gets a good and fair deal. He's been with them for a long time - that does still count for something but all councils and companies are having to look at where their money is going and paying someone when they aren't providing a service is something they must look at.

Apart from anything else - if he's in the union he's been paying his union dues for long enough so it's time he got value for money from them!

good luck to you both,

EileenH

Hi Margaretann,

First of all I endorse everything Eileen has said, but I do understand that persuading Jim to take a Union Rep along with him could be difficult! Men...... How's Jim been since he came off of the Prednisolone? When I came off of the steroids for a few days, so the Consultant could do more blood tests, I was in a dreadful state. I couldn't turn over in bed, couldn't get out of bed, shower, wash my hair or dress myself unaided. Is Jim in this state? If not, I wonder if he has a frozen shoulder (or shoulders). Its a dreadfully painful thing - I had it several years ago and it eventually responded to cortisone injections. There were certain positions I simply could not move my arm because of the excruciating pain. Just a thought. From experience my PMR symptoms returned within 5 days of stopping the Prednisolone and returned worse than before. I do hope everything goes well for you and Jim. Its so worrying isn't it.

Take care

Lizzie Ellen

Hi Margaretann,

I read back through the 4 pages of this thread to refresh my memory on Jim's story. I see Jim drives trucks or forklifts for a living? That's hard to do with a painful shoulder(s) with the constant need to turn the steering wheel.

When I was at my worst (both shoulders very sore and couldn't lift my arms) I could only grab the steering wheel of our car very low - just above my lap. I couldn't get my hands up to 10 o'clock and 2 o'clock like is always suggested. I soon stopped driving all-together as I didn't feel real safe driving like that. I asked my wife to drive for awhile.

Being a man [i:c7ea79a4ea](careful EilleenH... there are a few men reading this forum too,[/i:c7ea79a4ea] tee hee :lol: [i:c7ea79a4ea])[/i:c7ea79a4ea] I know how Jim feels about NOT taking a union-rep with him to meet his boss. I felt the same way the few times I needed to speak with my supervisor. If the UK is anything like the US, the union-rep is there to protect the worker's rights. Sometimes we just have to 'swallow our pride' as it were and get representation that's offered to protect us.

______________

In case you couldn't find the link on 'how PMR is diagnosed' - posted by Mrs. K [i:c7ea79a4ea](I think that's who posted the link :roll: ),[/i:c7ea79a4ea] here's a copy of that text.

[quote:c7ea79a4ea][b:c7ea79a4ea]How is Polymyalgia Rheumatica Diagnosed?[/b:c7ea79a4ea]

There is no single specific test to diagnose Polymyalgia Rheumatica. Your doctor will make the diagnosis based on the history of your illness, a physical examination and blood tests for inflammation.

There are three tests that may be used:

Erythrocyte Sedimentation Rate (ESR)

Plasma Viscosity (PV)

C-Reactive Protein (CRP).

The presence of inflammation alone cannot confirm the diagnosis of Polymyalgia Rheumatica as inflammation is a feature of many other conditions.

Anaemia (a lack of red blood cells) is quite common in Polymyalgia Rheumatica so your doctor may also test for this though it can also be a symptom of other conditions.

Normally Polymyalgia Rheumatica will be diagnosed and treated by your GP. However, you may be referred to a Rheumatologist if there is any doubt about the diagnosis, or if there are complicating factors.

[b:c7ea79a4ea]Polymyalgia Rheumatica Treatments:[/b:c7ea79a4ea]

Treatment of Polymyalgia Rheumatica is usually with a group of powerful anti-inflammatory drugs known as corticosteroids (often just called steroids). They are not a cure, and relapses can occur. However, steroids will usually bring the symptoms under control over a period of time.

[/quote:c7ea79a4ea]

Hope this helps. Please keep us up to date on Jim's progress. Take care.

Margaret Ann. I do hope you are able to persuade Jim to accept the help offered by his Union. It's not weakness to accept the support he has paid for. At these interviews it is so easy to be thrown a question that you are unprepared for and to have someone at your side that will be aware of all the pitfalls really is a help.

I have personaly every reason to be grateful for a staffrooom visit paid by the NUT Rep many years ago.

His advice has made a difference of many thousand pounds to me since I retired.

Best of luck to you both. BettyE

Oops...

I think I posted the wrong diagnosis procedure that Mrs. K was referring to. Sorry. I should have copied and pasted the material from, \"BSR & BHPR Guidelines for the Management of Polymyalgia Rheumatica (PMR)\"

Here's that info:

[quote:e42376d50d][b:e42376d50d][u:e42376d50d]The Guidelines:[/u:e42376d50d][/b:e42376d50d]

[b:e42376d50d]Key Recommendations[/b:e42376d50d]

•Commence low-dose steroids with gradual steroid taper.

•Systematic assessment of the steroid response – whether it is rapid, complete and sustained.

•Early referral to a specialist for atypical cases and treatment dilemmas.

•Vigilant monitoring of proximal pain, morning stiffness, disability, osteoporotic risk factors and for any other symptoms that may suggest an alternative diagnosis.

•Prevention of osteoporotic complications.

•Polymyalgic disease relapse should be treated with re-escalation of steroid therapy. Development of symptoms of GCA requires 40-60mg prednisolone. Adjunctive DMARD therapy should be considered after the 2nd relapse.

1) We recommend that a safe stepped diagnostic process is adopted for the evaluation of PMR [Level of evidence 3, Strength of recommendation C]

The diagnosis of PMR should start with a clinical and laboratory evaluation for core inclusion and exclusion criteria, followed by assessment of the response to a standardised dose of steroid. The diagnosis should be confirmed at further follow-up. Any atypical features or response to steroid should prompt the consideration of alternative pathology, and specialist referral.

Unlike in GCA, urgent institution of steroid therapy is not necessary, and can be delayed to fully assess the patient.

[u:e42376d50d]i) Core inclusion criteria are:[/u:e42376d50d]

•Age >50 years, duration >2 weeks

•Bilateral shoulder and/or pelvic girdle aching

•Morning stiffness duration of >45 minutes

•Evidence of an acute phase response.(e.g. raised erythrocyte sedimentation rate, C-reactive protein)

However, PMR can be diagnosed with normal inflammatory markers, in the setting of a classical clinical picture and response to steroids. These patients should be referred on for specialist assessment.

[u:e42376d50d]ii) Core exclusion criteria are:[/u:e42376d50d]

•Active infection

•Active cancer

The presence of the following conditions decreases the probability of PMR, and they should therefore also be excluded:

•Rheumatic diseases: RA, Inflammatory arthropathies, SLE, other CTD, inflammatory myopathies

•Drug induced myalgia e.g. statins

•Pain syndromes e.g. fibromyalgia

•Endocrine e.g. Thyroid

•Neurological eg Parkinsons

[u:e42376d50d]iii)Patients should be assessed for their response to an initial standardised dose of prednisolone 15mg daily orally.[/u:e42376d50d]

An adequate response, consistent with the diagnosis of PMR, is a patient-reported global improvement of 70% or greater within a week of commencing steroids and normalisation of inflammatory markers within 4 weeks. As steroids may mask numerous conditions, a lesser response should prompt the search for an alternative condition.

[u:e42376d50d]ivThe diagnosis of PMR should be confirmed on further follow-up: [/u:e42376d50d]

Follow up visits should include vigilance for mimicking conditions such as other rheumatological diseases.

2) We recommend the documentation in the patient’s medical record of a minimum dataset which forms the basis for the diagnosis of PMR.

These are:

•The core clinical inclusion and any exclusion criteria

•Laboratory investigations prior to commencement of steroid therapy

oFull Blood Count

oErythrocyte Sedimentation Rate/Plasma Viscosity and/or C-Reactive Protein

oUrea & Electrolytes

oLiver Function Tests

oBone profile: Calcium, alkaline phosphatase

oProtein electrophoresis and urinary Bence Jones Protein

oThyroid Stimulating Hormone

oCreatine Kinase

oRheumatoid Factor (Anti-nuclear an

Hi everyone its Margaretann,giving you the update of jims interview with his boss today.

I done what you suggested and got all the imformation that i could from you guys and some other pages on patient uk, he refused to take a union rep with him, the reason being he didnt want all his work mates knowing his business,i told him it would have to be confidential but he says he has heard other peoples problems through chit chat that has come from the union rep.so he has no trust in them. Anyway when jim saw that i had put all this information to paper for him he refused to even look at it [God hes pig headed] they were not medical only some nonsense that i had put together, oh god i wanted to hit him, :x but to cut a long story short [because i always prattle on ] He took the information with him [i had it all printed nice and professional ] it looked good, any way he showed it to his boss and it went down really well, he didnt like that the docter had put shoulder pain down on his insurance line and was ready to give him a bit off disciplinary talk about his sick time, but the information that he took with him saved the day.the problem now after comming off the steriods he has not had a lot off pain and he will most likely be signed back to work when his insurance line runs out on the 19th july. I am worried that it will return and he goes off work again,or worse still he gets his appt with the specialist that he is not diagonosed because off lack off pain, and he then gets pain after this appt and has to go off work again,[no diagonoses nothing wrong with him] what then. :? this is making me grey haired he he,,, anyway got to go god bless all off you speak to you soon MARGARETANN

Hallo again margaretann,

I want to say something that helps but it's very hard to know where to begin. I have much sympathy with Jim and his near perfect, until now, health record.

Until I had PMR I was much the same. Reared by a mother whose mantra was don't make a fuss; you are all right, I believed I was and the shock of discovering that ill-health could strike me, too, was great.

I understand the desire to refuse sympathy and help and to want to continue to feel immortal with a stainleess steel constitution. and that makes it hard for the people closest to us so I have sympathy for you, too.

You say that since stopping the steroids Jim has not had much pain. Is that the truth or is it wishful thinking on his part? If he is determined that there is nothing wrong and he wants to return to work perhaps that is what he must do. Either all will be well and the suspected PMR was a false alarm or else the strain of his strenuous job will prove too much and he will relapse and have to accept that he is temporarily unfit as will his employers.

I have been retired for too long to be up to date with current sick pay regulations but Jim's Union will be able to fill in the details of his entitlement. There would surely be Health and Safety repercussions for any employer who allowed a worker to undertake tasks which would endanger himself or others. I seem to remember that you said that Jim drives a heavy vehicle.

Will you be able to go with Jim when he sees the rheumatologist or will he insist on going alone? Two memories are better thasn one in my experience and you must give the consultant as much information as possible.

It sounds hard and unkind but in some ways, the best thing that could happen ( other than a return to a pain free existence ) would be a really serious flare upthat would make a definite diagnosis straightforward.

I see you were posting after midnight yesterday; I do hope you are able to get a good sleep tonight.

Best wishes to you both, BettyE

Hi everyone

im posting at a reasonable hour not the middle off the night like i usualy do.Jims pain is back, only twingies in his upper arm but it is getting worse as the days go on.He is due to go to docters on 19th july,he was hoping that the docter would sign him back to work, I dont think so,, just awaiting the specialist appt.I now have the worry how are we going to cope, the money side does not look very healthy, but one good thing is we have mortgage sure, insurance, so hopefully our mortgage will be paid thank god.I have to thank you all, i would never have got through this without you.this is not over yet but thankyou and god bless all off you MARGARETANN

Hi all, i didnt know if i make up an other posting experience., or keep to this one, so sorry if im doing this wrong,,, Well Jim got his appt for the specialist its 6wks from now. The problem is his insurance line has run out.. So he goes to the docter tomorrow 19th July, hes all mixed up one min he wants to go back to work. the next he knows he is not fit enough, i cant go with him as my district nurse comes to see me everday, if he tells the doc to sign him back to work he will be off again thats a cert,if he stays off its a long wait 6wks he is so depressed and he is showing all the symptoms that you have told me about so i am now 100%sure, he has Pollymyalgia Rheumatica, this is not going to be easy in fact, this is just the beginning, he is not a very strong person, and i can see him asking to go back to work as he is not convinced he has anything wrong with him. he is so pigheaded he thinks hes right,, God,, he was never like this before, he always had a temper but nothing like this,he is like a different person :? this is going to be a long 6wks i have told him to look at this web site,but he thinks its not him, its utter nonsense but he has never looked at it so how can he say that, :? mabey one day,, 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? anyway as usual i am prattaling on, and on, so i will leave you all, just needed someone to talk to and a good listener which you all are ,God Bless, you all for all your words that kept me sane thank you MARGARETANN X

Hello Margaret Ann

Sorry to hear things are not improving It is difficult if Drs dont think you have PMR when you do and if your husband doesent believe he has it either that is double trouble !!

The painkillers you can take are the max dose of Ibrofen and paracetamol together every day and there are other non steroid antiinflamtories as well which I am sure others will advise on Some people do really well on the non steroid ones but I didnt but am fine with steroids

Something personal you havent mentioned how old Jim is ?? A friend of mine was made redundant at 62 He has diabetes which has caused him problems with sight and walking and he has been put on Pension credits disability living allowance mortgage relief council tax help etc etc and is now wondering why he struggled so hard to go to work and he did !!

There is help out there we have the Citizens Advise Bureau which I dont know if you have in Scotland ?? and I also dont know if your benefits systems are different to ours

The bad temper is I think possibly comeing to terms with the things you can no longer do another friend has very bad Arthritis and he is a changed character because of this and sometimes it is difficult to remember the guy who would be the first one to help you with anything but never wants help himself

Just remember PMR isnt life threatening and is manageable !!

Best wishes

Mrs G

Hi Margaretanne - I'm so sorry to hear that things are not improving for you and Jim and, if as you say, he is not very strong in dealing with either the GP or the illness then it is a pity that you are unable to go with him today - you could possibly have a telephone appointment with his GP whilst he is not around but that is probably a little late this morning now.

I agree with Mrs G's great advice including Ibuprofen and Paracetamol. Although Ibuprofen at full strength can be harmful to organs such as the kidney in the long term, it is only 6 weeks until Jim sees the consultant so for that period it shouldn't cause any problems and may relieve Jim's pain. I don't know how receptive Jim would be to adopting a diet of foods known to be anti-inflammatory, such as oily fish, beetroot, garlic and the spice turmeric added to as many meals as you can. Failing that perhaps you could get him to take a daily fish oil or evening oil of primrose pill. Any or all of this may give him some pain relief until his appointment in 6 weeks' time.

Tell Jim that if he doesn't want to look at this forum there is another site especially for those men who would prefer to be in contact with other men. I'm not sure of the details but I'm sure MrsK will pop up here and be more specific.

Meanwhile, if you can't get Jim to accept any of your advice then at least look after yourself and get some 'beauty' sleep today :zzz: as I see you were posting in the early hours again

My very best wishes and do let us know how Jim gets on today.

MrsO

Margaretann

I am sorry there is nothing more to add to what I have already said in previous postings.

You are in the same city as the first Support Group in the UK for PMR and GCA patients PMR&GCA Scotland and it has Charity status.

Their website, which I have given you before is www.pmr-gca.org.uk.

There is a wealth of knowledge right at hand.

It is also listed on this site as a support group with names and telephone numbers.

On that website and this one www.pmr-gca-northeast.org.uk there is a list of support groups and also the details for contacting the men only group who do not meet but keep in contact via email.

Pension Credits are available in Scotland and both your Social Worker and Citizens advice bureau are there to help.

Age Concern are brilliant as well.

If Jim won't do it, there is nothing to stop you contacting them as they welcome, like we do, carers, friends and family to meetings as also to answer queries.

There is sometimes a small fee for joining, but it can be waived. Nobody is turned away.