Lupine in Florida

[Redmermaid]

Where to begin...First of all, thank you for this site as I am having a terrible time dealing with this depression alone and appreciate the fact that you are all willing to share something so personal.

I was diagnosed with Lupus and Fibromyalgia in April of this year. Shortly after my MRI it was also discovered that I had several bulging discs in my back and one in my neck. Just ridiculous pain...

My main concern with all of this is the medications that most western doctors want to perscribe and how difficult is seems to find a Rhuematoligist who treats both Lupus and Fibromyalgia. I was on several different mood altering drugs such as Pamelor and the like for the chronic pain but those drugs made me almost insane...did not work so good. I was also on Prednisone and then told to switch to Plaquenil. From one steroid to another, and too many painkillers that don't help much at all. I can't tell if the Lupus is worse than the drugs anymore. I do have good days and bad days. The worst is when my ankles and hips are hurting too bad to walk and the fatigue is so oppresive that I can't take care of my 3 stepchildren or even just participate in everyday events. Some days I need a cane to walk around and others, no problem, I even wore a pair of heels to dinner last week!!! Made me feel like a woman again. I just wanted to write to thank you all for letting us newbies know that we are not alone. I have so many other symptoms when I am having a flare up that I would run out of room...but it is nice to also know that in the beginning this would seem normal until you can find what really works for you. I am going to see a doctor in New Mexico in October to see if I can stop taking the steroids. Wish me luck and sending some right back your way!!!

-Redmermaid

[Clare.T]

Welcome to the forum Redmermaid

I hope you will find it a source of comfort as well as information that could well make a big difference to your future with lupus.

It certainly can be very hard to find a lupus expert doctor, but they do exist and it's worth going to as much trouble and expense as possible to get one. Some people travel great distances for diagnosis and treatment plans, then get their care supervised by a local physician.

You write



I was also on Prednisone and then told to switch to Plaquenil. From one steroid to another, and too many painkillers that don't help much at all.


But Plaquenil is not a steroid ! It is a disease modifying drug of immense value in the treatment of lupus, an antimalarial strangely enough, with virutally no short term or long term side effects generally speaking, only many benefits.

It's important to know how lupus is affecting you - apart from the symptoms you experience, what antibodies do you have. Getting to understand the disease and your version of it, helps to empower and means you can better evaluate the treatment you are getting. It also makes it easier to develop a good dialogue and understanding with your physician.

The most sucessful treatment takes place in the context of a partnership.

Very often Plaquenil is not enough to get the disease under control. If so, there are options to add to the Plaquenil, including another anti malarial Quinacrine (UK Mepacrine), all depending on your needs and what you respond to.

Response to medicines is so individual, especially when it comes to the NSAID's and to anti depressants, both for depression and for fibromyalgia.

There are complementary medicines, what might be loosely called alternatives, and also complementary therapies that can be very helpful and are unlikely to harm
The problem with 'natural' alternatives and medicinal complementaries is finding a competent doctor trained in both disciplines who knows about lupus.

Take heart, and take care not to " throw the baby out with the bathwater"

Let us know how it goes !

Bye for now

Clare

[red24]

Hi ridermaid,

Sorry to hear that you are going thru such a rough time. I'm surewith out a doubt in my mind if you keep posting there is so many wonderful people here to help you thru the rough times. Sometimes after sharing helps since you just got a load off your mind of what is going on.

It is very overwhelming to have such a big problem set in front of you. I have to say it was very hard for me the first year of my illness which now was 16 years ago. My doctor put me on Zoloft and that helped so much. Good family support helps a lot too. I do hope that you have that if not make us your fill in family. I can't change things for you but I can sure share experiences with you that we have in common and most of all listen.

RA has eaten up spine up and like you I have herniated disc all the way up and down the spine. I have neuroapthy now in both legs and down my arms. I had several Facet injections and Razotomies for a few years and they really helped for about a year and 1/2 then nothing worked. I got so frustrated with the pain and lack of sleep having to get up and down all night because it was to painful to lay in one spot for more then 3 hours. My pain is somewhat controlled now by Methadone a pill I never ever thought i would be taking. I take a 1/2 of pill 3 times a day and that really averages out the pain. I have a neruologist now that is totally awesome and I will be going in for a implant surgery on my spine this Friday. This is a surgery that can really make a difference in your life I have been told. I have talked to several that have had this surgery and not a bad response from any of them about the surgery not helping. I'm going to make a post ASAP about my surgery and explain the etails about it. It would just be to much to try and explain typing then turn around and do the same thing again. The surgery is called a neuro impant stimulation. If you are going to the doctor anytimer soon you may want to discuss this with him.

Hang in the friend. I do hope you can get your depression under control soon. My lungs were chemically fried where I worked 16 years ago and from there it has been one battle after the other since then so I really understand what you are going thru.

Your friend,
Deanna

[Redmermaid]

Thank you very much for your reply...it was faster than I had imagined. And thank you for correcting me about the Plaquenil, I did know that it is an antimalarial med, but sometimes I get a little upset and tend to bunch things together. I do appreciate the advice and hope to contunue on this site as it seems to have even helped me just today.

[Redmermaid]

Thanks Deanna....reading your letter really makes me feel like I can handle this! Or at least most of the time...LOL...I can't wait to hear how your surgery goes and I will let you know how my visit out to New Mexico goes. Love and prayers!