Old 05-02-2017, 08:45 AM #1 (permalink)
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Default I don't know how to do this

Good day everyone. I am new. I am glad you are all here.....because I don't know how to do this
I have a crazy body...I deal with allot of immune issues. Hypothyroid, Addison's, Sjogren's, Systemic Lupus, IgA deficiency and low blood platelets/ITP.
I have balanced life and meds for a long long time and did pretty darn good. Last year my immune system attacked my blood and my platelets dropped to zero. So I had to do a year of high dose prednisone, 80mg, it was hideous, only it didn't work so I ended up having to do chemo, Rituxan. A rough rough year. The ITP is in check now for a while I hope but I ended up with this horrible chronic pain and fatigue. I had been told I had fibro years ago but it never really got me down so I kind of shrugged it off. But since the Rituxan, there is no shrugging this pain. I again have been told by my rheumy that this!😳
I have tried lots of rest, hot baths, Tylenol, Tylenol3, Meloxicam an anti-inflammatory, then was given lyrica. The lyrica only works as long as I am taking it so not really making it go away plus it causes weights gain so bad. So I have decided to go back to the prednisone. I have to take 7.5 daily anyway so I added an extra 5mg which my rheumey said was okay. It works best to just make it disappear but I wonder how long I will have to take the higher dose to get things to stop.
My symptoms are widespread soft tissue pain, weakness, terrible fatigue, my fingers and wrists just ache as well as my shoulders and the bottoms of my feet. I also feel pretty daft, kind of spacey, but that might be the lyrica. So as I said I just don't know how to do this, to live, I can't get anything done and don't even want to try. I end up with terrible face pain and headaches.
So what can you folks tell me? Is this forever or is it like lupus which flares then will eventually settle? Thanks, it's been going on since the end of January, and I just agreed to take it easy until things settled only it hasn't, and I am starting to get terrible fed up, scared, sad, miserable.....etc thanks so much Daylilly
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Old 05-02-2017, 01:45 PM #2 (permalink)
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Default Re: I don't know how to do this

First of all, welcome to the forum. You are among fellow sufferers, new friends who know and understand your pain, and more importantly your frustrations, sadness and anger.

You are already coping with such life-altering chronic illnesses, so I will not sugarcoat my life. But as you probably know real well, each person experiences fibromyalgia differently. For many it is stable, but sadly for some of us it seems to a semi-progressive illness, with many unpleasant surprises along the way. Like most of us here, I have a few good days, a few ok days and many bad days. The pain is always there, it is never ever gone. Whenever I get to sleep 8 hours (mostly only with meds), I am thankful for that. If I wake up and am able to take a shower, cook, do some cleaning around the house, I am also thankful that day. But I also know that I have to listen to my body the whole time and be prepared for the fact that it will let me down at the most unexpected moments.

For me acceptance is key. It takes times, but once you accept your 'new' you, and give yourself time to grief your loss, you learn to look at things through a new perspective. I no longer want to travel the world, go on city trips, I know I cannot have a career, or kids, or study psychology like I always dreamt to do, or own a house etc..... but I know I can be very happy whenever I find that perfect page-turner novel, or a nice cup of tea and a cookie.

You learn to appreciate the little things and sometimes I am seriously the happiest person on the planet, despite all my mental and physical problems. I know that makes me very lucky, because I know many healthy, happy, 'have it all' people often cannot find the same simple happiness in life....
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Old 05-03-2017, 02:04 AM #3 (permalink)
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Default Re: I don't know how to do this

Thank you for your reply. I think I already knew but hoped I was wrong.
But I did not know fibro was progressive it sure explains allot.
I did not want to have to learn about the ITP when my rheumy called last year, but I had to anyway. Now it looks like I will be forced to study fibro as well.
It is so frustrating, other people get to study art, music and dance, it seems all I have ever really had to study is my crazy little body how it works (or don't work) and how to make detours around what I can't do because of it.
I would like to know more about it as far as symptoms.
I would like to know more about burning up/temperature changes. I can suddenly begin to burn up, my temp rises from nowhere usually when I am too tired and can't rest immediately or if it is humid or too hot in the room or outside. When this burning up happens I almost panic and feel very anxious. I don't know if that is part of the physiology or if it is a mental panic because I am aware that I am about to get hit with a walup of pain amd fatigue that will land me in bed. It seems to bother my head allot, and I begin to sweat from my head until it drips down my face and in my hair. My hair will be drenched. Plus my head itches terrible. The only thing that can hault this whole thing is to get cold fast. From air conditioners on high to resting with cold packs on my head and body. Temperature plays a huge part in my health. I am on fire most of the time on the inside, even if I work to keep my skin cool on the outside. But oh buy if my skin becomes too hot, well then I am in trouble big time.
I also have Lupus and I know the sun plays a big part in managing that, but I have never read much about heat and humidity playing a part...but it does for me, but now I am beginning to think that the symptoms I get from heat and humidity alone without the UV rays might not be Lupus at all, but from the fibro.
Am I right? Thanks again, Daylilly
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Old 05-04-2017, 02:37 PM #4 (permalink)
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Default Re: I don't know how to do this

Daylilly,
My heart goes out to you as I know the pain and depression that fibro brings and I know how it seems to come and go with no logical reason behind it. I have had stable periods and then had days the pain was terrible and the fatigue was overwhelming. Right now I am on a stable plain and things are much better, but I know it could end at anytime.

It sounds like your dealing with other health issues that combined with fibro can make life unbearable. I think it would be hard to sort out what causes what symptom. Sharing a few coping skills I have learned along the way, try to keep your stress levels down as much as possible. To relaxing things like reading books, watching funny movies, bubble baths, short walks, planting flowers, being lazy for your own comfort.

We are so happy to have you here and hope we can provide some new ways for you to cope and also friends to talk to that understand how you feel and well make you feel better on your bad days. I look forward to reading your posts and chatting with you some more.
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