Posted 09 January 2007 - 02:44 PM
Posted 09 January 2007 - 03:05 PM
My friend with fibro says the weather bothers her. I asked my rheumatologist if that might also pertain to sclero and he said it shouldn't, although I do feel a bit bothered but nothing like you're feeling.
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 09 January 2007 - 03:16 PM
I'm really sorry you are having troubles controlling your pain. It can certainly be a roller coaster to say the least.
I use an anti-inflammatory and several times a week I have to take a pain pill that does really work for me. If you want the name of it I can send you a private message.
Hopefully the increase of Prednisone will help you out!
Posted 10 January 2007 - 02:56 AM
I also suffer the dreaded painful joints! But I'm basically on the same protocol that you are, with the prednisone and motrin, and another painkiller. I have a very low drug tolerance so it didn't take much to help my pain. I was diagnosed recently with rhuematoid arthritis on top of the sclero, so maybe my pain is a different reason than yours. I hope you find something soon!
warm and happy xo Vee
Warm and Happy to you! Vee
Posted 10 January 2007 - 04:33 AM
I'm so sorry you are in so much pain and the meds aren't helping. We have some information here at ISN on Pain Management that you might take a look at. One of the links in this section is to the American Pain Foundation that offers some great advice on pain management. Also, our section on Treatments for Fibromyalgia offers several ideas since this is a very painful disease itself. Hopefully, you can get some ideas to try and at least one of them will work for you.
Big Hugs to you Darling,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 10 January 2007 - 10:52 AM
I have both Scleroderma and Fibromyalgia and over time, my med regimen
has been changed to accomodate. Until I had a bout with Pleurisy, I had no
idea how much pain I was really dealing with and how much it had been
affecting my rest/sleep. It was then I was prescribed Celebrex (Mobic
added later), that I realized real benefit from the meds. The links should give
you some good information,especially the one in reference to pain management.
Like you, I don't like taking meds to begin with... so I try to keep them at a min-
imum number... as long as I can... I call it my "maintenance program"
I hope you are able to get relief for your pain suffering soon!
Posted 10 January 2007 - 11:38 AM
I would love for you to email me privately with the name of what you are taking.
Last night, I took my first 1/2 pill of the new pain med prescribed to me yesterday. I have not been able to sleep..... but it does seem to ease the pain.
I took another 1/2 pill today thinking I might be able to rest......NOPE!!
Posted 10 January 2007 - 12:52 PM
I'm sorry to hear that you are experiencing so much joint pain. I am in the same boat, and the weather definitely plays a part with the amount of pain I experience daily.
I was diagnosed with UCTD in September of 2004. Since then, I've been on Plaquenil, MTX, blood pressure meds, a pain med, and pain patches. I was on Humira, but my insurance is no longer covering that medication so I'm trying to decide if I want to try Enbrel or not. I have not been pain free since September of 2003 when my journey began.
I hope you are able to get relief soon.
Posted 10 January 2007 - 01:02 PM
I have taken almost every OTC and prescribed NSAID out there, and finally got some good relief from Etodolac. I've had OA for decades, 3 back surgeries, 5 herniated discs, bursitis and calcification in the shoulders and hips, and have finally been diagnosis'ed with lupus and sclero, so the pain can be unbelievable at times. pain medication don't reach joint pain very well, so you can ask your doctor about the Etodolac as well as others that have been mentioned. I hope you get some relief pronto!
Best wishes to you,
Posted 10 January 2007 - 03:13 PM
does anyone know of any good stretches for my back that can click it? think thats all it needs.