fibromyalgia treatments that AREN'T for the pain?

Hey there.
I just registered here today, but I've been browsing the forums here for a while.
Anyway, I'm seriously at the end of my rope. I can't cope with the symptoms any more and I need ideas of treatment. Problem is that pain isn't really my issue, and I don't want to needlessly medicate something that doesn't give me distress.
The pain is there, and it does get to points where I can't walk, but it just.. Doesn't bug me. I've had pain all my life. I was eleven years old when I had my period and started dealing with endometriosis. I'm used to pain and as long as its just the regular muscle/joint pain I get it doesn't interfere with my life. If I can't walk, I find a way around it. I have a pretty high pain tolerance.

However, in the last few weeks I've now developed full body muscle spasms/shaking. If I stay awake for more than 10-12 hours at a time the shaking can be very violent, accompanied with deep anxiety, nausea, breathing difficulties and gastrointestinal problems. My skin also mottles and turns dark dark purple and its pretty gross looking. I've had two of these attacks in the last seven days and they typically last about 3 hours at a time. The ER doctor at the hospital told me it was my fibromyalgia and there wasn't a lot they could do aside from give me an ativan injection to control the shaking.
But I don't want to be taking ativan all the time if it keeps happening this frequently. But, honestly, the fatigue, the nausea, the dizziness, the sensitivities and these episodes are too much to handle. I need some kind of treatment I can do on a regular basis to manage this.

I'm twenty years old and a college student. I shouldn't be having to schedule in naps, stay indoors and not have a social life, and not be able to stay awake longer than 12 hours without potentially having to go to the hospital. I can't live like this. All I've been told is to exercise and live as low stress as I can, but that's a lot harder than it sounds when you're dirt poor, in college and walking alone can be enough to push you over the edge.
I can't live like this. I was hoping that some of you deal with similar episodes/symptoms and would have things you've tried that work for you?
Thanks for reading all this. I'm really not doing well.

I'm in Canada so doctor visits are covered (treatment like medicine is not). And they all seem convinced that its all just fibro, though I agree it seems like a cop out.
They screen all my levels whenever I go in, when I was there during an attack they said all my levels were fine, urine was clean, blood was clean. The neurologist is certain its not neurological. He doesn't think I'm having seizures (I get black outs in time, sometimes missing entire days) and that the other episodes I have where I suddenly get extremely blurred vision, fall over, nausea and vomiting are actually migraines but without the usual head pain. He doesn't think I have MS and sees no reason for further neurological testing so no MRI or anything for me. He also thinks its all fibromyalgia (I have at LEAST fifty symptoms).
The other issue is that while doctors may be free, it takes a long time to see them. I've been waiting two years to get in to see the rheumatologist but they should hopefully be here next month.

Hmmm yeah a friend of mine with similar symptoms did mention a while ago that taking d vitamins helps her. I take magnesium off and on to help with cramping and GI issues.
I do feel that my symptoms seem weird. I keep hearing about how fibromyalgia has heaps of symptoms that I get, including allergies, hives, numbness, temporary vision impairment and dry/irritated eyes, seizure-like states, mimicking Lyme disease and chronic fatigue, hallucinations, anxiety, depression, loss of memory, fugue states, loss of balance and coordination, irregular heart rhythms, low BP-- the list just goes on forever. But it all seems so non-specific but I've had at least three doctors say that all of it is fibromyalgia and that it likely won't get completely better and it'll be a long time to see notable improvement. They warned me that now that I've started having these shaking attacks that they would likely continue as just another one of my symptoms. Ahh, I can't wait until the rheumatologist gets here. Thank you for listening and I will definitely update on my situation. I'm going to have my room mate take a video of the next serious attack I have to show the doctor so hopefully that will help!

Hmm well I need to do more blood tests soon so I'll ask if they can check my levels again for me. They don't actually tell you what the numbers are though, they only tell you if in their opinion something is wrong. But its worth asking anyway.
I'm not on any medications, no. I'm able to get emergency ativan but that's about it.

I can get a copy, yeah. But I'm pretty sure (according to the nurses) they charge for it and it takes 30 days or so for it to arrive in the mail. I know with my copy of my mental health file it took 3 months to arrive. Everything here goes slooooow. Wouldn't be so bad if I didn't live up north, though. :/

Hi Elli,

Welcome to the forum. I am glad you found us.

There are other ways to fight anxiety besides medication and one of them is through breathing and mindfulness. I would practice with the breathing first. In through the nose and out through the mouth. Called "smelling the roses and blowing out the candles". And this really helps. It should calm down the shaking.

Meditation is a good way to relax your muscles. It is basically focusing on them. Working from head to toe and relaxing those muscles. I think that this will help with the spasms.

We have the capabilities to heal ourselves with just breathing and meditation. It may not help with the pain a lot, but it will help some. It takes practice.

Find yourself a book on mindfulness. I am reading one now called "how to train a wild elephant" Each chapter has little exercises that you can do. It is a very easy read too. We are having a book club on the depression forum, feel free to join in...

I hope that you feel better soon.

Hugs, Karen...

The skin mottling intrigues me. Aren't there types of lupus where there is skin mottling (for example, subacute cutaneous lupus erythematosus)? Do the places that mottle seep blood? Have you been tested for anemia? Have they done any testing at all for lupus or any other autoimmune diseases? Do you take any medications that could be interacting and causing Stevens-Johnson syndrome symptoms?

It seems to me as if the doctors don't even want to try to find out what's wrong with you. I've run across a few of those in the last 29 years.

Please do keep in touch with us. If you find a solution to the problems you have, you would be doing the rest of us a great favor by letting us know the answer, and we'd all like to support you during this time.

Ellip,

"Sensitive Everything Syndrome" - I've heard Fibro referred to that way, and honestly, I think it pretty well hits the mark.

But that's one reason we have to be vigilant when experiencing a new, really bothersome symptom....we might miss something important. I ignored abdominal/back pain twice, when actually it was 1) my Appendix, and 2) my Gallbladder.

I'm sorry you are dealing with this so young. It's hard, no doubt about it. But we are here to support you...

Debbie

I'm glad you're finding some answers. Yes, I'd think the bulls-eye rash would be major. Please keep us updated as you go through treatment. I know Lyme is a bad disease and can even affect your brain, so that could be where the shakes are coming from.

Thank you for your support. I'm currently having some anxiety and flu like symptoms. Nothing serious, just dizziness and some mild aches and a low grade fever. But my anxiety keeps acting like a will stopping me from taking ibuprofen. Gah, so annoying. But I'm hoping that this is possibly a sign of me herxing (I've been able to eat better and get out more in the sun the past couple days) so hopefully it'll mean another remission of symptoms. Trying to keep my head up. My mom is helping look into treatment for the Lyme so fingers crossed I become higher functioning in the very near future. :)