Fibromyalgia Support Group

Oh hun,

First off, welcome home hun!

Second, You're right, You "can't" live with this sort of pain. But hang on tight here....we're here to help you!

There are somethings to try. For leg pain. Get some Magnesium. (and Immodium if need be).
Magnesium will help with the cramping in your legs. And it's cheap (walmart/ walgreens)
Next, invest in some Epson Salts. This too is cheap and it will help absorb any malic acid (pain) building up in your muscles.

Next, our lives have to be a blend of up and down. That means a little up and a little down. Do a couple of load of laundry....then that's it. Don't do all of it. Do the dishes....maybe something else...then it's time to rest.
Getting to know your Fibro body is an ever changing event, but it gets easier.
The biggest advice I can offer you is this...even if you find yourself in bed for a couple of days, your body is regenerating it's self. For normal people, this happens in about 8hrs of sleep. For us, sometimes it's overnight, sometimes it's days. We just have to roll with it. For me, I'm just thankful I can still repair my body with rest.

Find a good doc (I know your trying) but here is a link:
http://www.fmaware.org/site/PageSe...
just search under the find a fibro friendly doctor. Sometimes your average internist are better than the specialists.

And lastly.....look into swim therapy. This will keep your body moving....and in the water, we are weightless...you can move about and be free. It's an awesome feeling. Even if you stay in the shallow end....it's great! Some places like the YMCA even offer $4 swim sessions for non members. Even if you do it once a week, that's more activity than what you had last week. And trust me, the water takes away the pain. If you chose a YMCA, see if they have a heated pool. That's even a bigger plus!


Hun, there is so much more, an I just can't think of it all right now. I know how depressing this all gets. But all I can ask is that you think about trying the suggestions we have first.

For energy....D-Ribose.
For libido ....horny goat weed.
For muscle aches .....B complex
I know there is more....I'll have to dig the stuff up, or I know the folks here will step up and help.

Take care hun,
Big Welcome Hugs!!!!

You're right. You can't live like this anymore. You have to start making some changes. Coming here was a good step in the right direction.

I won't say first, but soon, you need to find a doctor you can deal with who knows about FM and Lyme disease. If you tested positive for Lyme, there is a treatment.

There are also treatments for FM. You'll read about them on DS. I, personally recommend Boswellia for pain because it has no side effects, it works and it's inexpensive. It's herbal so your doctor won't know about it. It takes 8 weeks to take effect.

Lots here have had success with Chinese medicine and acupuncture, so you could try that if you have the resources.

There is a chance that your husband will never understand your pain, but you were in love, you committed and you got married. Have some faith in that and talk to him about your feelings and then listen to what he has to say. Ask him for suggestions on how you might help him to understand. You are a team and each other's best ally.

There are several letters and articles floating around DS explaining our situation to non-FM'ers that you could have him read.

Sorting it out seems like a huge task but just take one thing at a time and it'll work out.

But get a decent doctor - for sure.

Hi, you have come to the right place. We understand what you are going through and know how painful this illness is. I've had it 24 years and was ready to give up many times.

I'm on a lose dose Naltrexone (Revia). I take 5 to 6 mgs a night and it has helped tremendously.

Another one I'm maybe considering is Savella. I've been on numerous other RX's with devastating results (allergic, side effects or sensitive).

What lab work have you had done? What are you on for your Lyme's Disease?

Things to check for could be vitamin D and vitamin B12 deficiencies (also check intrinsic factor for B12). I take weekly injections and most days, a daily disolvable sp? pill.

I take 6 mgs of Melatonin a night for sleep. Like you, bought a new bed but I also have 450+ thread count sheets and coverlets and, a memory foam pillow. It still is too hard sometimes.

One other thing your rheumy can check you for in Ankylosing Spondylitis (HLA-B27 gene, sedimentation rate and C-Reactive Protein) (you can do a search for more info in search box) and seronegative, reactive arthritis (Patrick's test). These two mimick fibro pain and symptoms.

There's a list of doctors up in the treatment section. I'll try and bring it back up to the top. I found my doc in Saskatchewan there. :)

we all know what you're feeling.illness is expensive and different people relate to sick people differently. i've lost most of my friends but made some new and precious ones. this is a good place to find understanding and information. i just found out that others find the blood pressure cuff as painful as i do. didn't know that and i've been ill for 23 years, and more. drs. are learning more about fibro all the time, now that they can make money off of us. there is a good medicine called xyrem. i get prescription from my sleep specialist, a psychiatrist. it gives me the deep and restorative sleep that i can't get on my own. hope you can have a sleep study, a new dr. and a little faith that there are solutions to our problems. welcome, and hi.

Oh my, I'm sure everyone who has FMS could write this story. I certainly could. I still struggle with living my life, as most of what comprised my life before I got so ill is gone. They tell me, too, for good. The doctor told me to 'just get used to it' when I was diagnosed. ARE YOU KIDDING ME?
Remember that not every treatment works for everyone, so if you try some of the things recommended here and they don't work, don't give up. Somewhere there is something that will help you handle the symptoms of FMS. Also, I believe that the expert for Lyme disease is a rhuematologist, the same specialty for FMS. These are the things that have helped me:
Ultram (tramadol). The lowest-dose opiod pain medication. It is not scheduled and so is not the trouble for your doctor than stronger drugs, like Vicodin for instance, in the way of paperwork. I am lucky to live in California where the paperwork is less than other states. My mother who had this as well, lived in Florida where scheduled drugs are very hard to get for any reason, unless you are registered with hospice. I hope you live in a reasonable area where you can get pain medication without that hassle on top of what you are already dealing with.
Klonopin (clonazapam) for sleep. Once you get yourself back on a regular sleep schedule, you can cut back, then completely go off this drug.
Stretching. My best exercise. I like being in a pool, too, just can't afford it on my fixed income. But just taking a warm bath can help with the pain and stiffness.
Diet. If you are carrying any extra weight, try to lose it. None of us needs that extra burden. I have put on some extra myself and am working to lose it now. I've only been able to lose 12 pounds, which means I might get back down to something reasonable by 2011. HA!
Oh yeah, and don't lose your sense of humor. You will notice if you spend much time with this discussion group that we have a pretty dark sense of humor around here. That is typical of people with dreadful diseases. It is common for cancer patients, so don't think you're alone.
Aggressive rest. Yes, that's what it is called. You need to relax and try not to tense your muscles. That can be hard to do when you are hurting. You will find that you have to really concentrate to do it, which is why I suppose they call it 'aggressive' rest. 1-2-3 REST! 1-2-3 REST!
Just after being diagnosed, I joined the Fibromyalgia Network and started to get their newsletter. They gave me the best advice on cognitive behavior techniques and other alternative treatments I could use as well as the standard clinical therapies.
Good luck to you. If you find it hard to communicate your condition to your husband, you may tell him that it feels like having an unending flu, with all the aches and pains that involves, PLUS adding on 30 years to your age. I read that somewhere and it seems right to me.
All the best.

I get SO angry when I hear that a doctor says they can't help. It's not that they CAN'T - it's that they WON'T. There are many, many different approaches to treating fibro pain, from the simple - pain medications, to the complex - herbs, acupuncture, massage. How you choose to treat your fibro is a very personal choice but please know that you DO have choices.

There are three drugs specifically approved by the FDA for fibro - Lyrica, Cymbalta, and Savella. There are many pain medications that help some of us, and there are many "natural" avenues to pursue as well.

To say "I can't help you" is IMHO malpractice of the most pre-meditated and cruel kind. You need to find a different doctor, as the one you have doesn't give a hoot that you're in pain and is willing to let you suffer - that's just wrong.

Welcome to DS - wish you didn't have fibro but since you do, this is a great place to be.

Hi Sleepless, welcome.

I remember when I was first diagnosed my symptoms were mild and I could still work. A very stressful job made my symptoms become unbearable. I think we have all been through that feeling of wanting to give up, especially when we first start the fight. Please have hope and faith--things will work out, but not always the way we want. I fought for two years just to get Medicaid so I could see a local, and well-known, specialist. I have a new pcp as well who is amazing. But...I still have constant pain.

In addition to the wonderful suggestions already mentioned, you can also try MSM. It has helped me a lot. You will eventually learn what helps and what doesn't. Please don't give up!

Everyone has given some great advice but I think you need a 2nd opinion, You have many things going on at the same time. Also it never hurts to go get 2nd opinion.

I guess the one thing I would add is if you feel something isn't right it usually isn't so please learn all you can...hugs, V

Hello Sleepless. I'm sorry that your pain has brought you here, but welcome to one of the best support groups that I've found. These wonderful people have given you a lot of information. Wonderbaby gave you this site to find a doctor: http://www.fmaware.org/site/PageSe... .I just went to it and found out that there's a support group in my town for chronic pain. It's only once a month, but I'll take that! There is also a lot of good information about symptoms and such that you may be able to print up to have your husband read. I have found with knowledge often (not always) comes understanding. Good luck with this. Keep coming back and share with us things you find help you and never hesitate to ask questions.
{{{HUG}}}

Welcome Sleepless. Are you on any treatment for lymes? I hope so as it is treatable. Yes you need to find a good Dr. and have more tests done. Don't give up trying to find a fibro friendly Dr. hugs