Living with..... Polymyalgia. Updated

jetta_wales

Given an update on page 2 and explained that she got it wrong and it was Polymyalgia not Fibromyalgia.

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I think my Mum is going to be diagnosed with this as she has the symptoms and her doctor sent her bloodiest yesterday saying the results would be back in the morning. She asked if she should ring today for them but he said "No there's no need, unless you hear from me just make an appointment for about 3 weeks time." as he's just changed her dosages for other medications too.

Well she got a call at quarter past 8 this morning asking her to make an appointment for this morning so obviously she's really thinking the worst now and I can't blame her at all.

Her half sister has ME and I know the two are linked so she will mention that to the doctor today today too. Mums symptoms are more around pain than the fatigue though so fibromyalgia seems certainly to be more likely.

She's 62 now so I know we need to look at DLA at some point preferably not too close to 65 and that's something we've talked about in the past too because all of her other problems since her heart attack. The potential stress of it will not be good for her though so I'll take as much of that stress on myself for her when the time comes.

But for now I was just wondering if anybody has experience of the condition and could give me a little first hand information. She has always been a very active person and is absolutely gutted about this as it'll be yet another hinderance to her living the life she was hoping to live for a darn sight longer than this, camping, running round after her 10 grandkids, going out in the boat etc. She says she feels like an old lady now Will it get worse over time if this is what she has? She will continue with regular exercise she has no aversion to that which I know will be beneficial for her but she's thinking now that she'll end up in a wheelchair or something. Is that actually a possibility?

Sorry for the long post but if anybody could shed a little more light on it for me then it would be appreciated. I'm doing all the googling but first hand knowledge would be helpful if anybody can offer it.

Thanks x

jetta_wales

The doctor said it is fibromyalgia and the levels of whatever he was testing for were very very high so he's put her on 12 steroids a day from today because it's affecting her head quite badly which he said was a bigger concern too. Plenty of side affects to go with steroids though of course and add that to the side affects of everything else she's taking too She has decided to stop taking the statins though, they're screwing her up royaly to be honest and she's only getting about 2 hours sleep a night on them.

Not a good day but the doctor did say she should feel a vast improvement in the next few days being on this many steroids. Not sure how many he wants her on long term but she's going back in a week.

paidinchickens

I can't really help but one of my best friends has this. She was diagnosed about a year or so ago. She has regular trips to the doc and the pain clinic up at the hospital. I think the first 6 months or so was the worst when they kept giving different pills but she has got used to what works for her and when now. She usually has a couple of really bad days followed by several good days!!

CountryGuy

Did her doctor also prescribe calcium replacement tablets?

If not and he/she wants your mother to stay on the steroids long term then it might be a good idea for your mother to ask for them.

High dose and long term use of steroids caused my mother to develop that brittle bone disease.

I hope your mother feels much better soon.

I go on high doses for short periods when my RA is out of control but I'm also prescribed calcium replacement after I told my GP what happened to my mother.

jetta_wales

CountryGuy wrote: »

Did her doctor also prescribe calcium replacement tablets?

If not and he/she wants your mother to stay on the steroids long term then it might be a good idea for your mother to ask for them.

High dose and long term use of steroids caused my mother to develop that brittle bone disease.

I hope your mother feels much better soon.

I go on high doses for short periods when my RA is out of control but I'm also prescribed calcium replacement after I told my GP what happened to my mother.

Yes he has prescribed calcium replacement tablets and also something acid to be taken once a week, no idea what that's for though.

mary-op

I take Alendronic Acid once a week and calcium twice a day...........been diagnosed with osteoporisis and OH is taking the same as he has spine problems.

jetta_wales

mary-op wrote: »

I take Alendronic Acid once a week and calcium twice a day...........been diagnosed with osteoporisis and OH is taking the same as he has spine problems.

Alendronic Acid that was it!

yvonneem_2

Hi, I have FMS and arthritis. I don't know which is worse to be honest but I do know how your mum feels. I went from being full of life to a dithering wreck overnight. I am only 53 yet feel 93 most days. I am on a huge amount of drugs, some work some don't. Steroids were prescribed for me initially for polymyalgia which turned out to be a mis diagnosis. The consultant told me that unfortunately steroids tend ot to work for FMS for some reason. There is a lot of weight gain involved and that in itself is bad for the condition.
FMS is a terrible condition that they say is not progressive but will last a lifetime. The only professional that has told me it gets better after 5 to 7 years is the occupational health doctor. I hope so because I want my life back which is probably what your mum is saying to you and to herself right now.
Good luck with DLA as it was impossible for me to get it although my mobility is very poor now. I go to work even though I can walk only with walking sticks now. I have supports and resting splints for my wrists and hands now as well. I must look a right sight battling my way around the college I work in.
I hope your mum goes on ok.

starchild1972

I have had fibromyalgia, secondary to hypermobility syndrome for 15 yrs. There is no actual blood test for fibromyalgia. Actually there is no proper "test" at all, it is a symptom based diagnosis. I also now have ankolosing spondylitis as well (oh joy).
Blood tests are done to rule out anything else, as are most x-rays, MRIs etc.

M.E. and fibromyalgia are not actually connected (either by virus or type of illness) although many symptoms are similar and it is known for both illnesses to run concurrently as well as misdiagnosis of one to the other being made. The two are completely different conditions and should always be treated as such. (trust me LOADS of experience on that one M.E./CFS is an auto immune system response, fibromyalgia is NOT an immunity problem neither is it an arthritic condition. http://www.falfibrofriends.co.uk/?page_id=281)
Fibromyalgia can be idiopatihic primary (i.e. it just happens, no known reason or cause) or secondary (most common type, usually with underlying Lupus, arthritis, hypermobility, severe musclular or ligament trauma).

http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Diagnosis.aspx

there is no specific test that can diagnose the condition.

As for prognosis, it may get worse, it may not, she may end up wheelchair bound, she may not. it is not a predictable condition. She will have ups and downs, good times and bad times but it is a fluctuating condition.
I must admit I have never heard of anyone getting steroids for fibromyalgia, possible for the primary condition but not for fibro alone. Sometimes low dose anti-depressants work to help sleep at night (tricyclics...don't agree with me though ) to break the sleep/pain cycle, sometimes epilepsy medication is given in low doses to confuse the neural pathways, sometimes it's just painkillers from standard paracetamol to morphine and all in between depending on the severity.

As for DLA..it ius EXTREMELY difficult to get it for fibromyalgia.

One thing, she certainly shouldn't be stopping any prescribed medication without her doctors knowledge.

jetta_wales

She hasn't stopped anything without her doctor knowing and I don't know what the blood test in particular was testing for but it was what he has used to conclude that that Fibromyalgia is the correct diagnosis for her.

DLA is something we were talking about anyway for whole host of things now that are really affecting her life particularly since the heart attack so this is just another on the long list for her unfortunately.

Thanks replying, I did kinda figure there'd be no good news though.

springs65

You woll find lots of help and advice here

http://www.fmauk.org/phpBB3/