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for the last two months my lupus and fm have been flaring. my rhumey increased my pred to stablise the lupus and to see how much is FM
if the pred works then he will increase my imuran so I can decrease the pred again I never did get down past 6, so he upped it to 10

my main problem is my hips and legs. it is so painful to walk or bend
I can't do much, doing anything is like pulling teeth with meds

I still have no choice but to do laundry , meals and groceries if I want to eat and have clean clothes.but the pain is out of this world.
I have appllied for a walker to help me get around, but I don't know if that will even address this problem

I see a new gp at the end of Feb. so I am really hoping she will be able to shed some light on all of this and help me.I can't go on this way

I don't even think pain pills at the point will work.
I don't know what the answer is. anyone that has had this in the past might be able to help, please
 

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Goats,

Gosh...You sound so miserable. When it gets that bad I have found that it time for injections into the joints in my hips. They help me walk again and work pretty fast too..(in my case).

Are you on Fibro meds? I take Cymbalta..and it has helped some, with that pain.

I feel really bad, for you. I is very difficult for us..when we still have responsibilities to take care of, when feeling so terrible.: I hope you feel better soon..

I am so sorry your feeling so bad.

Love,
Sandy
 

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Goats,

When did your doctor increase the prednisone dose to 10? I prefer a higher amount for a few days then drop back down as I think it gives a better gauge. I know that when I started my current burst of Prednisone last week it was 40 for 3 days then down to 20 for 7 days. I noticed an immediate improvement in my pain levels. However if your FM is also flaring I don't know how you would measure things. I guess if you get some relief then you know it is partly the lupus and if no relief then it is mostly the fibro.

It can be difficult to sort out Lupus pain from Fibromyalgia pain. I have learned in my body that when it is the shoulders, buttocks, hips and upper legs that it is my Fibromyalgia. That is just for me, everyone is different.
I do find that what I really like these days when my hips/buttocks area is in intense pain that Lidoderm patches help the most. My narcotic pain meds don't really touch that pain when it is intense.

I would just also want to say that until my Fibromyalgia was brought under control 5 years ago, it was difficult to sort out what was Lupus and what was Fibro. What things have you found that help control your Fibro?

Take care,
Karen
 

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Discussion Starter #4
thanks for your replies karen and sandy,
It is not good for me to go higher on pred as I am bipolar and pred affects it.
today I am having mini melt down as I just received a renewal for my disabilty. my gp passed away ,that is why I am seeing a new one at the end of the month, it will be interesting on the first visit when I ask her to fill out the papers.
I know I am unable to work but I have to rely that to the new doc. and let her catch up on my medical issures.
a new thing to add to this crazy mix

Karen I think the hip and leg thing is fibro after you mentioned yours
I take amytripline for fibro. perhaps I need an increase. I know right now I need a increase in my anxiety meds. hope I can wait till the 25th

oh .I am so glad to have this place to vent. I moved to my new apartment in Dec.and was so happy, till i realised how limited I am
but I thought I had it all worked out. but deep down I know it will all work out,just have to get to that place

stay happy everyone and keep striving for the great place
 

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Hello Goats
I noticed that you show you live in Canada. I know you get bad weather in that area and was wondering if you notice your pain gets worse when it is cold out?
My wife has never been diagnosed with Fibromyalgia but has been for Lupus, OA and RA and she gets alot worse pain in the winter in her hips.
Damp also makes it worse so the days when we get freezing rain seem to be the worse for her.

The only thing that seems to help is she stays in as much as possible when it is cold and keeps warm.
If she gets outside it gets alot worse for her.

Also I do not know how your Medical System is compared to ours but I seen you only mention a GP do you not have a Rhuemy you see?
If not is it possible to start?
 

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Discussion Starter #6
Thank you RWB200 for taking the time to suggest things
yes I have a rhuemy for the last four years. but he only treats lupus. he is unwilling to treat anything else

so I have to see the gp for everything else.and as we all know with lupus there are many overlaps

the winter up here has been very hard this year. lot of other places also
from very cold to mild,damp, tons of snow. we beat our own record for amount of snow this year in Ontario, I am sure that has a lot to do with the fibro and lupus aches form arthritis.

it is very hard to get into seeing doctors here. a lot of people don't even have family doctors. even my rheumy I can only see ever six months.(he is to busy) he will phone you back ,but that usually takes about a week
so don't get sick here (lol)

today is a better day in spirits. but the pain is about the same. so I am off to a hot bath
 

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Goats,

With Fibromyalgia it is important to keep moving everyday so being in your own apartment again could be good in the long run. I would ask about adding Gabapentin or the newer Lyrica to the Amitryp for the Fibro. They are anti-seizure medications and for me are far more effective in managing the pain issues. I also take Nortryp (cousing of the Ami) for my Fibro and it does help some with the pain. Perhaps with your BiPolar you can't take the seizure meds, you can check that out at www.drugdigest.org

Take care,
Karen
 

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((((Goats))))

I just wanted to say that I hope that things have improved a little for you. I hope that you will get your walker and that that will make a difference in your life, and wish you a good appointment with your new GP.

I don't know how either how to the tell the difference between lupus pain and fibro pain, only that I had tended to ignore the possibility of some things being fibro problems until the lupus was better under control, and it made sense that the fibro was causing some things, mainly pain and mostly bad at night so started amytrip.

I hope you better days ahead for you, and send you my warmest wishes xxx
 

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Discussion Starter #9
update

after being on the extra pred, I think I have pretty well fiqured out everything, the hands,feet and some of the muscles and other weird stuff seems to be lupus as those have become less of a problem, the hips ,neck arms and shoulders are fibro.

I was reading about a new drug for fibro, lyrica, I am going to ask my new doctor if I can try it. the drug sounds promising
so far things are better, just not walking or bending. so hopefully that will come along with this new med.
 

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Lyrica is the best thing I have tried so far for pain relief from either lupus or fibro. No side effects that I can tell, and almost instant relief of the burning, stabbing and electrical pains I was experiencing in my arms and legs. Will make you a little light headed until you become adjusted to it, so taper up slowly.
Good luck, hope it works for you! Be Well Tracy
 

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goats,

Lyrica is a anti-seizure medication similar to Neurontin/Gabapentin. I have been on the Gabapentin for almost 5 years now and it is a wonder drug for Fibro pain in my book. If your healthcare system requires you to try the Gabapentin first (some insurance companies in the USA require this) don't be discouraged. I was really groggy in the beginning and didn't dare get behind the wheel of a car for several days, I got groggy again with each increase in dose but it always leveled out.

Let us know how you get on.

Take care,
Karen
 
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