Living with..... Polymyalgia. Updated

gingerandrubarb

killerpeaty wrote: »

Others have said all the medical side but I'll tell you my experience.
I'm 21 and it started at 17, I found out the name for it only a few months ago when I saw the specialist. I'm at uni and it makes everything really hard, I avoid taking out books because it's too painful to carry them, I worry about walking and going out in general. I can't wear an off the shoulder bag because it hurts, I need help with cooking and writing. I can't sit or stand for that long without pain (about 5 minutes for standing and 15 for sitting) and because of this I'm called lazy! I regularly have days too painful to stay awake, all the rest of the time I'm tired. (I'm up this late because I'm worried :-/ )
There are a host of things I can't do that I haven't mentioned, but through the support of my boyfriend and parents (and my siblings who incidentally also disabled with completely unrelated things!) have helped incredibly. Let your mum know that you'll lift the pans if she can't, my boyfriend doesn't do my cooking, but he lifts and opens and it's so useful. But it's not admitting defeat either. Offer to walk her to the shop, it stops the fear that something will knock into you and you'll be stuck. Regular injections of tea! It's a godsend! Seriously, I would not have gotten through any education without it, it perks me up to the point that I nearly don't feel tired. : ) I know these all seem small but it makes a huge difference in day to day life, at least to me.

I also have it *hugs* I am 27 and like you i have insomnia. I rely on 19 tablets per day to even barely 'manage'. What people without fibromyalgia don't realise is how painful the pain is. They automatically pressume that the worst pain they have had is the same type of pain we have... It sooo isn't.
It IS a nervous system defect meaning it affects all of the nerves. Some all of the time and some interchange. The nerves sit on the skin. they tell you if your hot, cold or in danger. So they need to think about having pain ALL over your body, head to toes. I also have TMJ and reynauds, M.E and Colitis and Diverticulas which are secondary conditions.
My husband is my carer and at 27 i feel ashamed to have anyone caring for me or even having to rely on others. I am stubborn that way :rotfl::rotfl: I also have sons (ages 2,4 and 5) and cannot pick them up, open juice cups, crisp bags, take them to school or at times get out of bed through sheer pain. I cry ALOT because i feel like such a bad mother. (i do know i'm not but i still feel rubbish)
I just wanted to say big *hugs* and to let you know that their are other 'younger' fibromites like us that understand exactly what you are going through. xx

formaldehyde_perfume

I've been too ill to form any sort of written response to anything since you posted about this subject, but I'd just like to add that I am 22 (23 in july) and have fibromyalgia along with other conditions.

Once you get over the initial shock (and, in a lot of cases, relief too) of diagnosis fibromyalgia really isn't that bad, I won't lie and say it's anywhere near positive but if you have a decent GP and or a good pain management centre then it doesn't mean your mum should stop doing anything she already does. She has been experiencing these symptoms for a while and was still managing to maintain a quality of life so just knowing the name shouldn't change that.

What was invaluable to me was a short course on pain management by my local physio department. It helped me understand the causes of the pain, how to cope with lower levels of pain, what pacing was and why it was important, etc - I strongly believe something like this would be of benefit to all fibromyalgia sufferers.. And don't be fobbed off that the pain clinic only deals with physical factors like nerve blocks, acupuncture, surgery etc like I did, any pain clinic worth it's name tag will be a multi disciplinary team working in all areas of pain management, even some cases including things like yoga and massage.

I'm still not well (and it is 2:35am too) so I'll probably think of more to say when this blip has eased off.

gingerandrubarb

jetta_wales wrote: »

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

There aren't any blood tests that diagnose 'fibromyalgia' they do the blood tests to rule out other conditions because the symptoms of fibro can be similiar to other things such as thyroid disfunction, anemia, hormonal imbalances etc..

Also M.E aren't the same and they aren't believe it or not genetic. M.E is a condition similiar to fibro but it is more a fatigue based condition and has less amounts of pain (i believe a medical journal stated fibro was something like ten-fold the amount of pain) but it comes in relapses.

Somepeople might have M.E for 6 months then it go away for 2 years then come back etc. Once the relapse is over they don't have any of the symptoms.

However, people with fibro can have M.E as a secondary condition.:eek:

So i'm unsure what it could have been that she had but steroids in my opinion is possibly looking at a thyroid problem. x

gingerandrubarb

formaldehyde_perfume wrote: »

I've been too ill to form any sort of written response to anything since you posted about this subject, but I'd just like to add that I am 22 (23 in july) and have fibromyalgia along with other conditions.

Once you get over the initial shock (and, in a lot of cases, relief too) of diagnosis fibromyalgia really isn't that bad, I won't lie and say it's anywhere near positive but if you have a decent GP and or a good pain management centre then it doesn't mean your mum should stop doing anything she already does. She has been experiencing these symptoms for a while and was still managing to maintain a quality of life so just knowing the name shouldn't change that.

What was invaluable to me was a short course on pain management by my local physio department. It helped me understand the causes of the pain, how to cope with lower levels of pain, what pacing was and why it was important, etc - I strongly believe something like this would be of benefit to all fibromyalgia sufferers.. And don't be fobbed off that the pain clinic only deals with physical factors like nerve blocks, acupuncture, surgery etc like I did, any pain clinic worth it's name tag will be a multi disciplinary team working in all areas of pain management, even some cases including things like yoga and massage.

I'm still not well (and it is 2:35am too) so I'll probably think of more to say when this blip has eased off.

I agree. It's something that every fibro sufferer should at least try. My pain consultant gave me acupuncture and hydrotherapy as well as putting me on a programme called the RIVERS programme. It's pretty much exactly what you had hunny x
(although didnt work for me) x

starchild1972

gingerandrubarb wrote: »

There aren't any blood tests that diagnose 'fibromyalgia' they do the blood tests to rule out other conditions because the symptoms of fibro can be similiar to other things such as thyroid disfunction, anemia, hormonal imbalances etc..

Also M.E aren't the same and they aren't believe it or not genetic. M.E is a condition similiar to fibro but it is more a fatigue based condition and has less amounts of pain (i believe a medical journal stated fibro was something like ten-fold the amount of pain) but it comes in relapses.

Somepeople might have M.E for 6 months then it go away for 2 years then come back etc. Once the relapse is over they don't have any of the symptoms.

However, people with fibro can have M.E as a secondary condition.:eek:

So i'm unsure what it could have been that she had but steroids in my opinion is possibly looking at a thyroid problem. x

Sometimes M.E. symptoms don't go away though unfortunately, especially for the 25%ers and those in the moderate to severe category. They don't always have relapses, sometimes they are in a permanent state of exhaustion like my DH. (He has a fantastic consultant who unfortunately is retiring next year :-( )

jetta_wales

Ok an update.

Firstly her memory's a tad shoddy, lots of people say the statins don't help that either and today she's said it's Polymyalgia not Fibromyalgia and reading up on it that makes a lot more sense. It also explains the blood tests and the doctors alarm and concern about her head and giving the heavy dose of steroids.

Is that better or worse though? Seems somewhat better from what I've read so far but a lot sounds the same too. There are too many myalgias

She's feeling vastly better today already after the first days steroids (all 12 of them) so that is something we're obviously very pleased about, seeing her struggle so much with every movement she made was so hard.

I'll update my first post too and it looks like lots more googling to be done.

Thanks again for all the replies, much appreciated.

diane2495

hi,
My mum has polymyalgia rheumatica. She was a very fit and agile 74 year old and was literally crippled by it. She couldn't even comb her hair!
It took about 4 months to get a diagnosis as blood tests didn't show anything up, but eventually one of the doctors suspected it might be PMR so put her on steroids, and within about 2 days of starting, she was like a new woman! She could do all the things she could do before it all started.
She's been on steroids (and calcium supplements) for about 6 months now, with the dose reducing each month. She's now down to 4 tablets. She still gets pain if she tries to do too much and isn't 100% herself but is so much better.
Her eyesight has deteriorated very quickly, she has an appointment at the hospital next month. Not sure if it's the PMR or if it's a cataract, hopefully the latter.
I've met other ladies of a similar age who have had PMR, one was on steroids for about a year and has been symptom free since, another was on steroids for about a year again, then symptom free for 2 years and it returned recently. It's now being controlled by steroids again.
I hope this helps. Your mum will feel better for having such great support from you!!

sailorjohn

I have suffered from Polymyalgia rheumatica for more than 10 years, fortunately attacks seldom last more than a few days but can be severe at times, worst of the symptoms are aches, extreme fatigue and lethargy. Treatment with steroids is almost magical but long term use poses the risk of osteoporosis. Most sufferers are said to recover from the condition after a few years. I understand the condition to be caused by malfunction of the immune system attacking the body cells causing inflammation, which is detected by an ESR blood test. My diagnosis was made after diagnosis of Temporal Arteritis, a swelling of the arteries in the temple, if not treated immediately this can result in permanent blindness and any arterial swelling at the temples should not be ignored. It seems that temporal arteritis commonly affects patients with polymyalgia. After more than 10 years on various doses of steroids I am now weaned off steroids and only experience rare and mild symptoms, so the future need not look bleak.

Anubis_2

I just need to comment regarding fibromyalgia - firstly fibromyalgia varies in severity, so while one person may be able to take a couple of pills and then go to work, ( in which case they have a mild form) another may be practically bed and wheelchair bound and have a very severe form, as do I.

It's of little use to say get plenty if sleep etc and you will feel better, because fibromyalgia is a non restorative sleep disorder, and therefore sleep makes little difference, and that is IF you are fortunate enough to be able to sleep. It is 22 years since I slept during the night, I have zero sleep pattern and when I do manage to sleep, it is for a short burst as pain awakens me.

I have had it for 22 years, and I am wheelchair and bed bound with it - the specialist said I was one of the worst cases had ever seen, and my pain was more than apparent.

Over the years my health has got so bad that I have little quality of life and the pain, exhaustion and weakness is at such a level that I am hanging on with the skin of my teeth.

I do now also have other conditions such as congestive heart failure, chronic fatigue syndrome, acute asthma, severe arthritis, multiple scerosis and a good few others that I don't wish to disclose.

However, with regard DLA, it is not the condition but how the condition affects you - I was awarded MRC and LRM from DLA start ( my hospital worker actually put the claim in, we had never heard of it) and this was based off symptoms alone together with hospital reports before diagnosis.

I was then awarded HRM and MRC when it got to the stage where I was constantly in a flare, and recently been awarded HRC HRM even though i have been needing round the clock care for years (I never appealed earlier awards)

I really just wanted to point out that fibromyalgia can be a very severe condition, and if you have it but are able to lead a relatively normal life, and even go to work, then consider yourself fortunate, because it is certainly not
the case for some sufferers. It's all fine and well saying It shouldn't stop you doing anything, but trust me, it certainly can do, and I know other cases similar to mine.

I am sorry about the diagnosis of Polymyalgia, and I hope your relative can get some pain relief soon.

clueless24

Wow, take out the heart failure and the asthma and substitute with chronic osteoarthritis, hemicranial continua, posistional vertigo, social anxiety and depression to name but a few and that could be me.

(It's really hard to believe that someone with all these problems and more can be placed in the WRAG on migration from IB to ESA). Anyway didn't mean to hijack the thread. just wanted to say that was an excellent post Anubis.