Hello

General
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Hi Everyone, my name is Stacie. I have Fibro, like everyone here. (amazing, since it's a fibro web page. LOL) I also have a whole alphabet of other illnesses. The diseases that are plaguing me right now are Fibro, Arthritis, Sjogren's Syndrome, Crohn's, and IBS. There are others, but I don't want to be here all day listing them.

Because of the Crohn's disease, my Gastro doc put me on Prednisone to take care of the swelling and pain. After I went off of them, per doctors orders, I went into the worst Fibro flare that I've ever experienced! For almost 3 weeks, I was in bed all day, in tears because of the pain. I begged my Pain doc, my GP and my Rheumy doc for some kind of relief. Finally my Rheumy put me back on the Prednisone at 7.5mg for awhile. I will stop taking the Prednisone at some point. I don't want to develop Cushings Disease. Although I'm back on the Prednisone, I'm still in a world of pain! Now it seems I have categorized my life as Pre-Prednizone, and Post-Prednisone. I'm not sure how I'm living with all this pain, but I seem to see a new day, every morning.

I am disillusioned by my pain doctor. I am very good at vocalizing my pain, but my pain doc isn't listening, like Delores posted. He just doesn't seem to care. He is convinced that his procedures will take care of every pain, but the it's not. I don't' see how my nerve block on my back, or the knee infusions will take away the fibro pain. My general family doc wants to increase my pain meds, but my pain doc doesn't agree. My GP wants his patients to be pain free, but again my pain doc doesn't, but won't give a good reason why. Like others have mentioned, this year, even before the Prednisone, has been a bad winter.

I'm really at a loss what to do next. I admit that I'm obese. I will start attending TOPS meetings, so I can have gastric bypass to help with my weight. BUT... it is NOT the reason for my fibro pain. I am tried of doctors blaming everything on my weight. Yes I'm fat, NO it doesn't mean everything should be blamed on me being fat, and I'm sick of them saying it is. Yes I realize that being fat does complicate things, and brings with it a host of other problems, but Fibro is NOT caused by being fat.

I am on many medications. I suffer from depression, and I also suffer from a weird sense of humor. Because of the Sjogren's syndrome, I have lost most of my hair, and I will so have to wear a wig. This in itself is very devastating to me. What I would like to do, is to go off all medications, and "reset" my body. My psych doesn't agree, but in the same breath, I don't want to become suicidal, which will happen if I go off my antidepressant (cymbalta, xanax and abilify). So I'm sort of at an impasse.

I try to go for short walks, and I'm usually I'm almost in tears when I come back, due to the muscle and joint pain and swelling.

Anyway, does anyone have any suggestions? I will, as of Thursday, start a modified elimination diet. Which means no gluten's (Sjogren's don't have Celiac, but seem to be gluten sensitive), no sugars, no dairy, no red met, no.. well a bunch of things. But I was on it 20 years ago and felt wonderful! I just don't have the will power that I had in my 20's. LOL Why is it?

It is nice meeting all of you. I hope to "meet" you all in posts later.

Stacie

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Stacie, instead of trying to figure out your own treatment plan for a very complex set of conditions, I would suggest that you continue searching for a rheumy who can work with you to improve your symptoms. No gluten doesn't sound like a bad idea, though. If I haven't mentioned to you already, we also have communities for Sjogren's and Crohn's (click the relevant links on the communities list on the righthand column of the Main Page). I hope you get some relief soon.

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Hi Dancermom, I am already a member of the Sjogren's community. :) That is how I found you guys. I wish I had the luxury of finding a new Rheumy, but I don't. I'm on disability, and there are only 3 Rheumy's taking my insurance. Changing insurance isn't an option. The other 2 Rheumy's were worse then then one I'm seeing now.

Thank you for responding,

Stacie

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I'm sorry to hear that, Stacie. I hope other members weigh in with suggestions, then.

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it could be me bet i see the hypocrisy it obiou at leat to me that if you are "pain FREE" then you no longer need a pain specialist and you would be messing with his bottom dollar.. I say to hell with what he thinks Id rather apologize and be pain free than to be in pain and wait while he gets with the program.. but thats just me ALSO you could file grievances because he is messing with the quality of your life i didnt know you could but i had to file one today

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Hi Stacie and welcome. It's nice to have you with us. I hope you find our forum useful.

You sure do have an ugly situation at the moment. Did your doctor decrease the Prednisone once he put you back on it? Are you on a lower dose than you'd been before, when you felt well? If that's the case, maybe you might need more and begin to taper off of it slowly? I don't know and I'm no medical authority but it might be worth looking into.

Also please DO NOT just stop using your meds all at once. i know that several of them need to be tapered off, and quite frankly you might go into a terrible flare if you stopped everything at once. Also, you should ask your doctor how to do it if you really want to get off the meds. But why would you want to do that? If you had diabetes, you wouldn't get off your insulin. Fibro, depression, IBS, Sjogren's, they are all real, medical illnesses, so why not treat them? Perhaps some day in the future medicine can offer us a better alternative than simply pilling us into comfort but for now that's what we have.

I don't know your situation but I just wanted to let you know that I had the radio ablation done that you mention and it really helped my back for about 8 months. It turns out that I had osteo arthritis in my back and the fibro was the pain from it, apparently. Once the nerve was burned, the pain went way down (after a really difficult first two weeks.) Sometimes you just have to go with the flow. And in this case, you may think that the treatment won't help the issue until you have it done and realize that it did help and the issue wasn't simply fibro.

I hope this is helpful. I have to go now because my arms are aching.

Hugs to you,

Petunia

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Thank you for the responses. Don't worry about me going off the medication all at once. I don't want to crash. I am thinking of detoxing off my pain meds, and seeing if that helps my pain. I've been on Fentanyl patches in the past (2 different times) and in the end, it seemed to cause more pain then help. I'm wondering if that is what's happening now. But I'm scared. The only phobia I have is I'm terrified of more pain. I've been in pain for most of my life, including as a child, due to illnesses. I'm not scared of spiders, or high places, etc... Just scared of more pain.

Petunia Girl, the nerve block was to address my slipped disks and arthritis in my back. That is a blessing! I didn't realize how much it worked until it stopped. The injections into my left knee isn't really helping. The ultra sound shows it IS healing it, but I'm still in an incredible amount of pain, so I don't know what the next step will be.

I realize all my medical problems are real diseases, and I have a lot of them. So, yes, I'm treating them all, but sadly I am on 14 different medications daily. My liver is fatty, partially from my obesity, and partially from my meds. That is one reason I want to possibly stop some of my meds. They are all hard on my liver, especially the Cymbalta.

I normally take one day at a time. Since post-steroids, I've been taking it a few hours at a time. I know there is a light at the end of the tunnel, but at the moment, it seems that pain is blocking the exit, and broke the blub. 8P~~ lol Through it all, I still have kept a hold of my really weird sense of humor. I think that is what keeps me going at times, aside from my boyfriend and two adult children (who STILL live at home.. HELP ME! LOL). My two puppies, 6 months old and 5 months old keep me going as well. If not, then I'll have a huge mess to clean up! LOL

Thank you for the support.

Stacie