I need some reassurance....newly diagnosed.... | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums

I need some reassurance....newly diagnosed....

ProHealth CBD Store

anna_lbr

New Member
Hospitalized Memorial Day with GI virus....mimicked liver and gallbladder disease. Have hurt ever since. Tested and finally diagnosed in Sept. Sent to specialist clinic for FM last week and started pool therapy. Had my first flare-up after therapy for three days of hellish pain.
1. How are you coping?
2. What pain meds to you use for flare-ups or regular pain?
3. Do pain meds help in the long run?
4. Can you still work? (I am a RN...bedside nursing is out for me right now)
5. Any particular books or pamphlets that were helpful?
I would appreciate any and all replies....thank you.
 

Kathryn

New Member
Welcome! First the good news. What we have is not fatal. Flares come and go. They can be caused by stress, overwork, or who knows what. All of us are on different medications, as what works for one, makes the next deathly ill or has no effect. It's pretty much trial & error. I take 300mg Neurontin, morning & night. I also have arthritis, so when it hits me, I use Vioxx. I have 2 muscle relaxors. During the day, if I need to function, I take Flexoril. At bedtime, I use Zanaflex. Most days I can use OTC Ibuprofin, but on the days I need the Vioxx, I switch to Tylenol. I am allergic to most pain meds, and Darvocet is the only one I am able to take. I save it fo the worst times, as I don't want it to lose its effectiveness.
I used to be a city bus driver. I took a medical retirement about a year ago, and presently draw my pension and SSDI. We also moved from Oregon to Nevada to take advantage of the drier climate. I seem to function much better down here.
All the books written by Devin Starlanyl are very helpful. Most book stores can order them, if they are not in stock, and you can often find them on eBay.
Hope this helps you. For more information, check out some of the articles on the home page. They contain a wealth of information. You can also order pamphlets (up to 99 free) if you click on the first message at the top of the page.
Kate
 

Shirl

New Member
Sorry to hear you were diagnosed with FM, but am glad to have you join us.

Well, like Kate said, we are all so different as to what works for us.

1. am copeing quite well right now, have been since I found something for sleep.

2. no pain meds, make me deadly sick. If I have a flare up I take OTC Advil gel capsules, with a low dose of Xanax (0.25mg), its wonderful for the spasms. I up the magnesium that I take daily.

3. Allergic to them. Except for the Xanax once a day for 'racing brain syndrome', I take supplements.

4. do not work, have not worked in years.

5. Books; 'The Fibromyalgia Advocate'
'Fibromyalgia & Chronic Myofascial Pain Syndrome (Survival Manual)'
'Fibromyalgia & Chronic Myofascial Pain Syndrome (A survival Manual)' Second Edition, all the above by; Devin Starlanyl, MD.

'From Fatigue to Fantastic' by Jacob Teitelbaum,MD.

'The Miracle of Magnesium' by Carolyn Dean,MD,ND.

'Your're not sick, You're Thirsty! by F. Batmanghelidj,MD.

The last two books are as important to read as the others, most of us that have FM/CFS are deficient in magnesium. The other book concerns the fact that most of us are dehydrated.

If you go to the 'HOme' page, you can sign up for Pro Health's free catalog, and also their newsletter. Both are worth your time.

You will have a lot of company here, we have many RN's on this board that have FM/CFS. also an MD too.

Again, welcome to the board, and if you have any more questions, please feel free to ask, we will try to answer them for you.

Shalom, Shirl


[This Message was Edited on 10/15/2003]
 

cindye

New Member
Sorry! My daughter was diagnosed five years ago and it has not been fun! I came across a book "What Your Doctor May Not Tell You about Fibro" and Dr. St. Amand uses the guaifenisen protocol - found a wonderful chiropractor who was familiar with the treatment and it changed my daughter's life. She is not 100% but can function. Tried college in August but the stress of being away from home the first time and hellish roommates put her into a flare and I could not get her well enough over the weekends to continue. so rather than keep her in stress and get worse we packed her up and brought her home. Will try a local college this time. Good luck in whatever you try! There really does not seem to be an answer that is good for everyone but it sure helps if you can find a medical person who is informed and will read anything you bring to them to try to make the situation better.
 

Adl123

New Member
Hi, Anna. Welcome. Don't be discouraged, you have a good support gtoup here. My doctor wanted me to do aquatherapy, and I did so, for 6 months. I would go for one hour twice a week. I loved being in the water, but, like you, I suffered intolerable pain afterward. I spend three days in bed for every hour of therapy. I sometimes had to crawl to the bathroom. After 6 months I finally told the doctor that I just could not do it anymore. I had no life! He wasn't happy, but then he has never had Fibro. Different strokes for different folks. Keep your spirits up and be patient. Some of us have had CFIDS/FIBRO for as long as 20 or 30 years, and we are still learning. Good luck and God bless. Hugs, Terry
 

fwbla

New Member
Hi I just found this site too. I am no expert. I have had significant problems for 2+ years. I started a very stressful nursing job soon after my symptoms really flared up. I had symptoms for years but they began to intensify.The really sad thing was that this was the perfect job for me in every way except one.STRESS! It got so bad I was off work at least once monthly due to severe pain. Ultimately I had to quit. I returned to my old office nursing job in pediatrics. I can do this blindfolded and backward 99.5 % of the time.Yes, it is boring many days, I have to look for the challenges, and yes I have had one day I called in sick due to pain in the last 4 months but it is the compromise I had to make. I have 3 kids, one in college and two who will be going in a few years. This isn't the time for me to retire if I can help it. Fortunately RN's are in demand and my old clinic took me back at $2 more per hour than they paid me 15 months earlier.I never have a day I feel good anymore just ones that are better. I try to remind myself how much worse it could be and keep a good attitude.
[This Message was Edited on 10/15/2003]
 
Top