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Pain everywhere


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#1 Sherion

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Posted 11 February 2008 - 02:29 PM

Hi everyone,

 

I have a question. Does Sclero cause widespread pain in all the muscles and joints? I know I have fibromyalgia, but this is different. I hurt everywhere. I am unable to take anti inflammatories due to stomach issues. My doctors are hesitant about giving me anything strong enough to ease my pain because they are afraid of addiction. I've tried several non pain medication but they don't touch the pain. I'm in so much misery I don't know what to do. Any suggestions?

Thanks in advance,

Sherion



#2 Shelley Ensz

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Posted 11 February 2008 - 03:23 PM

Dear Sherion,

You'd really need to check with your doctors regarding what's causing the widespread pain. But it would typically be from fibromyalgia and not scleroderma, as very generally speaking, fibromyalgia is much more painful and widespread than scleroderma.

Look for fibromyalgia remedies instead. I've found medications to be totally useless for fibromyalgia. I'd have to be comatose before the meds made a difference, and that's no way to go about life either! Some of the things that work for me include dealing with sleep disorders, in fact that makes the biggest difference of all. If I have just one night of impaired sleep it can set fibromyalgia into full gear.

Warm showers, warm baths, gentle stretching, mild walking, and floating in warm pools are helpful for me so I try to do them on a preventive basis. Moist heat packs when all that fails. But most of all, tuning it out by total immersion in work or hobbies. The brain can only handle one thought at a time, so getting very engrossed in activity (NOT passive things like watching TV, which in my experience just worsens the "interesting healing sensations".) Which is another point -- relabeling the pain...don't call it that in your brain, instead find other words for it, such as healing sensations.

Simply using the word "pain" wires the brain into all other painful experiences in our life (both mental and physical) and thus exacerbates it. So try to find new words for it, like, amazing sensation from left elbow which is getting milder all the time.

Even projects you don't feel up to and don't want to do can help, such as cleaning out a closet or at least two feet of a shelf in a closet (don't overwhelm yourself with it.) It forces the brain to focus on something other than the sometimes massive healing sensations, and the movement provides a gentle stretching and the sense of accomplishment can't be beat for uplifting self-esteem.

Singing along to beautiful music is another trick that can't be beat. Pick something lively and upbeat. It gets the endorphins going, and endorphins are our bodies natural pain relievers -- better than ANY pills they can give us. So think in terms of stimulating endorphins naturally through music, laughter, activity, tossing a tea party, making a silly drawing, writing an absurdly awful poem. Inviting a neighbor over for scrabble. Even tending to a cherished pet can help raise endorphins.

Let us know how you manage to deal with this and what things work for you.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 barefut

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Posted 11 February 2008 - 03:23 PM

Sherion, I am right there with you. My doctors have not come right out and said - no pain medication but I know that is what thay are thinking.

My rheumatologist has upped my prednisone from 5mg to 10mg and said I can go to 20mg if that does not help. It has not helped and I have been on 20mg for the past 3 days with little effect.

I have saved and used sparingly meds I got for my kidney zone pain and will use one on really bad days.

I really don't want to be on pred - I don't need the moon face or the weight gain, among other scary things! And the way it looks right now, 20mgs may not be enough. But I have to be able to function too! It is so hard. I wish I knew what else would be appropriate. I have heard people speak of arthritis meds and antimalarials. Hopefully someone will chime in with some good answers.

This pain is the pitts, to put it polietly. I totally understand.

Take care,
Barefut

#4 Shelley Ensz

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Posted 11 February 2008 - 03:34 PM

Thank you for mentioning prednisone, Barefut.

Of course, there are plenty of danger warnings regarding scleroderma and prednisone, so that's certainly not an easy answer, either and it needs to be seriously discussed with the entire medical team before undertaking that approach. And, more importantly for Sherion, steroids do absolutely nothing for fibromyalgia pain, unfortunately.

Here's the prednisone information and warnings page:

Steroid Warnings for Scleroderma.

"Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma."

And here's our Fibromyalgia page, for lots more pointers!

Fibromyalgia.

I hope you can find some approach that's helpful, even if it is not medication.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Sherion

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Posted 11 February 2008 - 03:43 PM

Shelley,
Thanks for all the suggestions. I have tried to get my mind on other things but so far it has not helped.I just can't seem to find anything to really get me busy enough to distract me. I know a lot of my pain is the fibro. The doctor tried me on Lyrica, which is supposed to be for fibro, but I had a really bad reaction to it. I see my rheumatologist tomorrow and see what he has to say.

Barefut, Thank you for your reply!!! At least I don't feel so alone. Prednisone has not been mentioned to me, yet. I'm not to sure I would want to take it. I've just lost 40 lbs and don't wish to gain it back.

Sherion

#6 Sherion

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Posted 11 February 2008 - 03:48 PM

Shelley,
Thanks for the info on Prednisone and the article on fibro. I'm going to spend some time now reading it. Maybe it will keep my mind busy for a few minutes!!

Sherion