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Posted 9/6/2009 8:02 PM (GMT 0)
Hi I'm new here .Ive had fibromyalgia for years and managed quite well ,but a year ago I was diagnosed with multiple connective tissue disease as well. It is soo hard to figure out which one is making me feel soooo crappy right now I can't get thru the day without a 3 hr afternoon nap !! I just drag myself around . Prednisone helps ,I took that to be able to go to Disneyland with the grandkids . We had an awesome time !! I am on Plaquenil. Lyrica and Flexeral .I just got the Flexeral and have no idea if it does anything for me .Anyone else on it .????? My rheumatoligist doesnt explain much .

Linda

Posted 9/6/2009 10:17 PM (GMT 0)

Hi, Linda, and welcome!  I'm so glad you found us and joined in.  I'm so sorry you are dealing with all of these problems.  It seems that those of us with fibro do have other health issues, too.  But, it could be worse! 

It's my guess that the problems that are making you feel so bad is from your connective tissue disease.  I say this because Prednisone doesn't usually help fibro.  BUT, I do remember one time I had to be on Prednisone for a completely different problem and I landscaped my front yard in a weekend!  LOL  Yep, it can make  you feel great.  But, it doesn't help fibro in the long run...at least that's my understanding.

Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibro and you might get some help there.

I take malic acid/magnesium for pain and fatigue.  Many with fibro are deficient in these nutrients.  This has helped me a lot.  There is a link on the Fibro 101 thread all about them and how they work in your body.  Also, we can be deficient in vitamin D.  I live in Florida and never thought I could possibly be deficient in D, but I am.  My doctor has me taking 3,500 IU of vitamin D3 a day.  Again, there is a link in the Fibro 101 thread all about it. 

I'm so glad you found us and joined in.  Read back posts and don't hesitate to ask questions.  We are here to help you.  I hope to hear more from  you soon.

Sherrine

Posted 9/7/2009 3:03 AM (GMT 0)
Hi Linda!

And welcome to the Fibro Family here! I am so lucky I found this place several years ago and have made such wonderful and supportive friends. I have no idea how I would cope without them.

I'm not very knowledgeable on connective tissue disease so I'll bow to Sherrine on that one. But one of the side effects of most of the medicine you take is sleepiness, tiredness and just feeling yucky! (that's a fancy medical term we use here a lot...lol) I think most people taking that combination would be tired feeling but it does sound like you are more tired than you should be. Also, add to the fact that your immune system is compromised and you have a hard time fighting off whatever bugs are going by. Add the fatigue that goes with fibro.... you see what I'm getting at here. You are bound to need rest.

I would imagine after a while you will adjust 'somewhat' but you may not be very alert while on that combination. I'm saddened that your rheumy isn't explaining things to you very well. Make sure to ask whenever you don't feel you are being well served by a medical person. They often forget we don't know these medications nor are we used to handling them every day like they do. If they still don't answer your questions to your satisfaction then talk to the pharmacist where you get your medication. They are the ones who know the side effects and contraindications off the top of their heads...it's their job! Get on the phone and get some answers.

Another idea is to ask your doc about something to counteract the sleepiness. I did and wow, does it make a difference. I take narcotic medications for pain and found that sometimes while driving I would stop at a traffic light and realize that I had just had a little "power nap" while waiting. Scared me silly! So I found out about Provigil and asked my doctor if it was reasonable for me to try it. He agreed it was a good idea and I've been taking it ever since. It is designed for several uses...1, to treat people with narcolepsy 2, to treat people who take medications that cause sleepiness 3, to help shift workers adjust. It doesn't 'buzz me up' nor force me to stay awake but for me it lets me stay more awake and alert during the day. Some people are more sensitive to it and do get insomnia but each person has to either find the right dose or it might not be something they want to take. I am very grateful to my doctor for being so open to suggestions...but I know he would never let me try something that was not safe and appropriate for me. You might find some information online, print it out and take it along to your next appointment.

OK, I've babbled enough. Glad you're part of the gang. Please do join us for our daily Koffee Klatch where we just have some fun. And also watch for the postings before our Chat Nights which are on Thursdays... 6 PM Pacific, 9 PM Eastern. Hope to see you there!

Chutzie
Posted 9/7/2009 3:48 PM (GMT 0)
Hi Linda and welcome to the family. I tried flexeral for neck pain a couple of years ago and couldn't tell that it did anything for me but I think my pain was more arthritis than muscles at the time or a combo of both since I had been in a wreck.

 

I don't have a lot of knowledge about connective tissue disease either but I agree with Chutz and Sherrine about prednisone not helping fibro. But if it would do to me what it did to Sherrine I may have to try it. devil My DH is on it for the second time in the past couple of months trying to shrink a polyp in his sinuses til he has surgery in Oct and I haven't seen a lot of energy out of him. Hmmm, maybe now is a good time for him to replace the fence for the dogs to make their play area bigger. idea

 

Fatigue has always been my biggest problem, it drives me crazy smhair . I can work through the pain most of the time but when the energy is gone it is gone. I also have sjogren's which causes fatigue too and recently found out I have celiac which destroys the lining of your small intenstine and you don't absorb nutrients as you should. My vit D is low and so is my sodium so who knows what all causes the fatigue but it doesn't make it any easier to deal with. I don't nap during the day but have to laydown and rest for an hour or so most days just to get the dogs out to exercise them in the evenings.

 

I'm glad you joined, you will get so much help on here.

 

luv and hugs

Marlee

 

Posted 9/8/2009 6:00 PM (GMT 0)
Thanks for the replies .I will phone my Rheumy and ask her some questions. I think I need a new one .She just asks How are your lungs heart etc ? no troubles ??.You'd think she'd check that out herself .
I know MCTD is totally confusing .I know for sure I get polymyositis ,inflamed muscles . I take 20 mg prednisone when that flares up for 2 days then 15 for 2 10 for 2 down till I;m off and hopefully the flare is gone too . The docs dont want me on prednisone everyday. I know these diseases are a living day by day thing but as you all know, sometimes you just feel so depressed .

Linda
Posted 9/8/2009 7:15 PM (GMT 0)
Linda, welcome to the forum. This group is a wonderful group of kind supportive people.

My rheumy told me last October I more than likely had MCTD. Last August I had biopsy
that confirmed a variant of scleroderma. I present repeatedly with the antibody RNP.
My overlap is Sceroderma, Lupus, and RA. Today my rheumy confirmed it.

Scleroderma is my dominant disease in the overlap. I have had Fibromyalgia

for years.

I can usually tell my fibro flares from the others. My fibro flares are usually allover
burning muscle achiness. I am now getting some fibro relief from Savella. My dosage
is 50mg 2xdaily. I have been on it for 8 weeks. It took 7 weeks for it to kick in.

Are you experiancing any lupus flares? When I flare I get subcutaneous lesions and
rashes. I do not get the malar rash across my cheeks, but do have erythema about
the size of a quarter, it kind of looks like a bike tire patch; I'm sure glad I wear bangs.
I no longer take the plaquenil. My rheumy put me on Methotrexate an immunosuppresant.

Linda I do take flexeril, not on a daily basis. I use it when I am flaring, and will take

 before bed time, or if I am not going to be driving.

I excercise, usually daily walking , do relaxation therapy, deep breathing and soak
in a hot tub to relax muscles. I also post on the Lupus Forum there are others with
MCTD there too.

Glad you found us and hope you find some pain relief soon. If you have any

 questions, ask away!

Robin

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