I am new here

Hi all, I have never posted here but have read several comments over the past year trying to educate myself. I was very ill over the past year at different times and knew I had something going on with me. I don't have insurance so extensive blood work was not an option for me.

My M.D. diagnosed me with vasculitis about 6mo ago due to an awful rash and other symptoms but we didn't know the underlying cause. I saved money to see a Rheumatologist, and with the help of my receiving medicaid (because I have been unable to work) recently I was able to get the blood work needed. I found out yesterday I have Lupus and Fibromyalgia.

The Rheumy was very cold about telling me I have lupus. He said it wasn't active at this time so no big deal. I told him well "duh" if it was I wouldn't be able to get out of bed. I was told there is no tx for Fibromyalgia and that I would have to live with it. I am already on Cymbalta for depression (which started when I got so sick and I couldn't move for weeks). He told me that was a tx for it. I told him that the Cymbalta was not working for the pain at all. Needless to say, I will not be returning to him and since I am self pay with my Dr.'s I can see whomever I want, I choose just to stay with my M.D. who is smart, kind and compassionate. So my question is what are other people doing as far as tx goes for these diseases?

What has helped, what hasn't helped. Where do I go from here. I have an appointment with my M.D. this Friday, I know he will be shocked to hear my news. I am on 15mg of Prednisone, Leflunomide, 5mg Oxycodone 5 times a day, 4mg Xanax a day, Temazapam, Abilify and Plaquinil, all prescribed by my MD. Methotrexate did not work for me. I still only sleep 2-4 hours per night and am still in pain.

If anyone has any ideas please let me know, I'm at my wits end in dealing with this. Does Prednisone even help Fibro, or just the Lupus? I have done a lot of reading on the subjects and I find that a lot of my reading is just repeated stuff. I figured I may need advice from real people with this problem. I am very shy and do not usually post things anywhere, but I am pretty desperate at this point. I realized I needed a support group and this site offers me hope. Thanks, Lisa

Post Edited (Sugaree67) : 7/30/2014 8:01:43 AM (GMT-6)

I'm sorry I will correct that in my post. I do take Oxycodone..:) and thanks so much for your reply and for pointing out my error. Yes I have read Fribro 101, and the Abilify and done wonders for my depression too..:). My directions for the Xanax do say to take 2 mg at bedtime...I will try taking it before that and see if it helps my sleep. Thanks for the advice!

Post Edited (Sugaree67) : 7/30/2014 6:07:14 AM (GMT-6)

Thanks for your quick reply and yes i will use paragraphs next time..it didnt even occur to me...lol..i was just
trying to get out what i was thinking..yes i have read the fibro 101..helpful info there..i welcome all helpful info as I know things very from person to person..:)

thanks for your personal advice I appreciate it.....!

Hi, Lisa. Another welcome! I'm glad you decided to join us.

I'm sorry you found a rheumy who was so cold. I've been to those docs, too....yech. My regular doctor is also good, and I agree, that's such an important thing to have. If all else fails, I know he's very smart -and he believes me!

As far as Prednisone, I doubt that's for the Fibro, since F. is not considered inflammatory. That must be for the Lupus.

I'm on a couple of the "brain" drugs for sleep, Nortriptyline and Clonazepam (my doc says it's useless to try to treat the pain without a good night's sleep), and two for pain, Gabapentin and Hydrocodone. Most of my serious pain is from Sciatic Nerve damage; I actually didn't need anything continuously until that happened.

Tramadol used to work for my flares up to that point - it's a milder, synthetic narcotic. It sometimes even gives you a little energy. You might do well with it. But who knows? - - we are all so different.

Good luck! Hope to see you around more.

Debbie

Pred is normally a short-term solution to a flare. It is for the lupus.

Have you tried tramadol? It works well for some people in managing pain. One thing I learned through long experience is that you want to use the least amount of medication that manages your condition effectively. Life is a long time, and jumping to a large dosage to start off is not helpful in the long run.

Muscle relaxers have worked well for many. It helps me fall asleep as well.

Some primary care doctors are hesitant to treat these conditions, IME. For them, it is a legal issue to prescribe long-term painkillers. You may want to check with your MD and see if s/he is willing.

Have you applied for ACA? I have my insurance through my state marketplace. It is a relief.

Think a hot tub Can feel good, but if you stay in long tiring also....heat relaxes the muscles... Each of us is so different in our reactions ...so if you have access , try it..

My sister says a sauna helps her pain from fibro...i have not tried that in a long time..although i noticed a local health clinic sells sessions.

I have a hot tub. I have heard people with lupus can be senstive to the heat. I have fibro and no lupus. I love my hot tub!!! It has been very good treatment for my fibro. I have been taking note on how I feel with the hot tub. I have had it for about 3 months. I have stayed in it too long and got weak. You have to be careful taking certain meds and getting into the hot tub.