Fibromyalgia ...

[Rainwilds]

Hello all,

I was diagnosed with Fibromyalgia yesterday, by my Rheumatologist.
The diagnosis was made by exclusion of other issues such as Lupus, thyroid issues, etc. I went through a batch of tests until she deemed it Fibro.

I always had a feeling that I had it, given that I had symptoms since I was about 12 - I am 22 now. At first, they were quite mild but as I got older, and especially after my IC diagnosis (October 2008), my symptoms got progressively worse.

My symptoms are mainly:

> Back Pain
> Severe Leg Pain, with shooting, stabbing moments.
> Migraines
> Lack of concentration/coordination
> Frequent bouts of nausea
> Extreme Fatigue

My doctor has given me a trial pack of Lyrica (75mg).
I haven't started it yet.

I had been researching this drug because I also wanted to try it for my IC.
At the moment, I am at a crossroads as to what to try next in the IC department because everything I have tried so far either hasn't worked, or has caused me awful side-effects.

Can anyone please share their experience with Fibro and Lyrica?
What are your symptoms like? How has Lyrica helped? Did it take long to work?

Any information at all would be wonderful ...

Thank you so much,
Rainwilds

[Rainwilds]

Please, if anyone has anything that they can share about Fibromyalgia ...
I've been having a really hard time sleeping lately.
It's 3:45AM here in Australia, and I feel like I haven't slept at all ...
I am having a hard time dealing with this diagnosis ...
My mind is racing.
I just hope that one day I can feel semi-normal again ...

Thank you ...

[KarenAnne]

Rainwilds, I have had fibromyalgia for many years, long before my IC developed. I am so sorry you are feeling so bad. I do not take Lyrica, but know several on here do & hopefully they will chime in. My urologist put me on amitriptyline for it's crossover effect on the associated conditions of IC, with my rheumatologist's blessing.

I always have some degree of low level muscle pain, & get occasional flares. Over the years I have recognized my fibro flare triggers. I get flares from the twice yearly time changes, severe weather change, getting too tired, etc. I also get fibrofog.

It'll get easier. It's like when we get IC in the beginning. We have to learn what flares us. I have gotten relief with massage, physical therapy, hot showers, getting enough sleep. Alot of people get relief with muscle relaxants. I basically make sure I don't get too tired or too stressed. Easier said then done, I know. If you get particularly bad trigger points, your rheumatologist can also inject them.

For your back pain try a hot shower, heating pad, or Ben Gay lotion.
Leg pain...a hot soak in the tub & massage.
Migraines...acupuncture, no MSG or aged cheeses, myofascial release of the shoulder knots, wearing sunglasses when you're in bright light, not getting too stressed or tired.
Fibrofog.....I write everything down & keep a pocket calendar with all appts. A sense of humor helps. (I always I have notepads everywhere)
Fatigue......I love naps. And it helps to schedule your harder tasks when you feel good. Like, I'm better in the morning, so I do my more demanding things then.

You can pm me anytime with questions. There is a lot of great info out there. Just ask your dr. for a reputable website. Best wishes & hang in there!

[Rainwilds]

KarenAnne,

Thank you SO very much for taking the time for such a detailed reply!

... It'll get easier. It's like when we get IC in the beginning. We have to learn what flares us. I have gotten relief with massage, physical therapy, hot showers, getting enough sleep. Alot of people get relief with muscle relaxants. I basically make sure I don't get too tired or too stressed. Easier said then done, I know. If you get particularly bad trigger points, your rheumatologist can also inject them ...

Thank you for the positive words ...
I guess it'll just be a whole new adjustment period ...
It's funny, because I just felt like I'd finally got all my IC triggers sorted out and now it's like it's back to the drawing board! I have always been worried that massages would hurt ... ? Silly, I know! I have an appointment with a physical therapist this coming week which is good ...

... For your back pain try a hot shower, heating pad, or Ben Gay lotion.
Leg pain...a hot soak in the tub & massage.
Migraines...acupuncture, no MSG or aged cheeses, myofascial release of the shoulder knots, wearing sunglasses when you're in bright light, not getting too stressed or tired.
Fibrofog.....I write everything down & keep a pocket calendar with all appts. A sense of humor helps. (I always I have notepads everywhere)
Fatigue......I love naps. And it helps to schedule your harder tasks when you feel good. Like, I'm better in the morning, so I do my more demanding things then.

You can pm me anytime with questions. There is a lot of great info out there. Just ask your dr. for a reputable website. Best wishes & hang in there!

Thank you so much for the tips!
What is Ben Gay Lotion? Is an anti-inflammatory lotion?
I will definitely look into getting some massages ...

It's funny what you say about notes ...
I have those little post-it-notes everrrrywhere at the moment ...
It seems the only way to remember things!

Also, what amitriptyline (spelling ?) did your doc put you on?
I have only tried Elavil - it was great for my pain (IC & Fibro) but caused serious retention issues ...

Once again ... a BIG thank you for the information ...
It is so wonderful to know that there is help out here!

[maryla]

Rainwilds,

I also have Fibro. What I've found that helps me the most is Hot baths with lavender, rosemary(do not use if you have high blood presure) and tea tree essential oils. These are also great for my IC pain too.

BUT the biggest difference I found is going on the oxalate diet. It also has helped my vulodynia tons too!!! there's plenty of info on the net. Hope it helps.

As far as the lyrica? The side affects scare me!!!!

hugs and blessings.

ps, I just saw the movie, Australia and I have to put it right up there with being one of my favorites!!!

[Rainwilds]

Hi Mary,

Thank you for responding!

It's great to know that there is a place like this where you can come and get support!

I will definitely keep up with the hot baths/showers ...
I actually woke up this morning and was so stiff and sore ..
I went straight to the shower and that seemed to ease things a little ...

I have hear of the oxalate diet ...
I will definitely look into it, thanks!

As for the movie Australia, it's quite sad but I haven't actually gotten around to seeing it! Haha! My Mum said it was great, she loved it!

Once again, thanks!

Take care :)

[KarenAnne]

Rain: I forgot you are out of the country. The amitriptyline is the generic for Elavil. No good if it gives you retention problems. And BenGay is an over the counter cream that gives a heated feeling. Don't know if you have anything like that there. I think LeeLee, one of the support leaders is on the Lyrica. I think it really helped her. Feel better!

[markov]

Rainwilds, I hope things go well for you in resolving the fybromyalsia. I will be going to a rheumatologist in December because I am having very strange issues nowadays also. My IC symptoms seem to be increasing lately also and I was considering trying the Desert Aloe Vera. Please give me your feedback on this medicine.

Thank you,

Marilyn