Fibromyalgia, RLS, and in need of kind advice!

RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
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earth2kristi

Fibromyalgia, RLS, and in need of kind advice!

Post by earth2kristi »

Hello, i'm brand new to this site. Ive been reading some of the posts here, and i find it really comforting that there are people out there who know first hand what im going through. Problem is, i'm only 21. I know that im not the only young person with these problems, but i haven't ever talked to anyone who is close to my age about this. I'm wondering if anyone, or if someone knows anyone who can give me some advice.

My biggest problem is doctors. Everyone i see refuses to believe right off that this could be my problem. Every time i see a new one i end up wasting more money and time seing more specialists, sadly only to re-prove that this is my problem. Most of the time, after all of this, the doctor will tell me they can't help me.

I'm on the look out for a doctor who is educated about this stuff, but they are surprisingly hard to find. Just about everything i've learned is from my own research, and it is frustrating to say the least that i can't find one doctor who is willing to take me on. I need to know what kind of doctor is the best for me. I could definately use some kind words to help me stay positive, and not give up.

Sorry to vent on you all, but it does seem to make me feel better. If anyone has experienced anything like this, let me know. It will really help.

Thankyou - Kristina B.

jan3213
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Post by jan3213 »

Hi Kristi

I responded to your post under General Topics. The following is my post.

I also suffer from fibromyalgia and RLS. I've had RLS my whole life, but was just diagnosd with fibro about 2 years ago. I'm so sorry you have RLS and fibro, but am really glad you found us.

Here's my experience with both. While both RLS and fibro are recognized conditions by the AMA, it has been my experience that, although I've had no problem finding a doctor who recognizes RLS, fibro is another issue. Many doctors call fibro a "wastebasket" condition. And, in fact, don't even want to deal with it. While rheumatologists are often the doctors who you think would diagnose and treat fibro, the rheumy I went to (one of the "best" in St. Louis), did, in fact call it a "wastebasket" condition and refused to treat me. I was diagnosed by my former neurologist. However, there ARE doctors who do treat fibro. I've know people who "interview" doctors before "hiring" them.

Self-education is extremely important for both. You've found a great site for RLS. And, I'm not the only one here who has both RLS and fibro. So, I hope someone else will see your post and respond. I'm sure someone will.

Chronic pain is a tough one. While RLS is often not painful, many people with RLS do have pain. I do. It's a different pain than fibro. And, you know how painful fibro can be. I've had trouble getting pain meds from my doctor, too. Some doctors are reluctant to prescribe pain medication on an ongoing basis. In fact, at my last neurologist's visit, I was told by him that, since many patients become "addicted", he is hesitant to keep prescribing pain meds because he doesn't want to be "blamed" for their addiction. It has been proven that if you take pain meds for pain, you don't become addicted--you may become dependant, which is entirely different. Of course, if you have a problem with addiction, that may be another matter.

Have you tried a pain clinic? That might be something to think about. As far as dealing with my own pain, I take pain meds occasionally. Have ou tried a "rice sock" for your fibro pain? Put rice in a tube sock and secure it tightly at the end. You can place this in your microwave, and when it's hot, use it on your pain points. It works really well--it's pliable and the heat stays for awhile. I also use a heating pad a lot.

As I said, I'm sure someone else will step up and help you. In the meantime, you certainly will find support here. Although we can't compare pain, I know what it's like to have both fibro and RLS. Take care and let us know how you are.


Jan
No one is alone who had friends.

Jenne1950
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Post by Jenne1950 »

A sleep study should prove without a doubt that you have RLS or not. That firmly diagnosed mine years ago. There are other problems that cause pain in the legs. A neurologist would be able to diagnose one that comes to mind. So if you've seen doctors and they can't give you something to help, maybe you haven't found the right doctor yet. I know it's irritating and frustrating when no one can help you. That happened to me with my fibromyalgia. For months I told my internist that every bone and muscle in body hurt. I had to see a rheumatologist to finally get someone who could tell me what I had! (Though I had that in the back of my mind).

Don't give up hope; some days it's hard not to, but it's what gets us through all this. This is a good support group, too, and they always help me in one way or another when I unload on them. I think a lot of us have had difficulties with doctors and finding the right medications. Good luck on your continued quest!
Jenny

Penguinrocks
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Post by Penguinrocks »

I thought I'd put this under this heading since it includes Fibro in it.

I'm in the middle of a flare up that I think is going to do me in. Yesterday I was actually thinking that i never want to wake up again.

This one is the whole gammit...the IBS, Fibro Fog, Chronic Fatigue, pain that even lamaze breathing isn't helping with.

Not to mention that I was in a meeting on Friday and the leg just went berserk on me! foot came off the floor!

I don't know what to do. Maybe I should call my neuro? I do have an appointment with her sometime this month I think.

I wanna crawl into a hole and die right now....i'm walkin like i'm 101 years old...

thanks for reading this...love you
Penguin
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jan3213
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Post by jan3213 »

Oh, dear Penguin ((((HUGS))))

I'm so glad you posted tonight. We NEED to know how you are---good or bad and it sounds like you're really going through a major rough spot. Yes, honey, I think it would be a good idea for you to call your neuro and let him/her know what's going on. I can hear your pain. I just wish I could DO something about it. Please call your neuro tomorrow, sweetie. And, let us know what's going on---

I love you!!!!!!!!!

Jannie
No one is alone who had friends.

ViewsAskew
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Post by ViewsAskew »

Oh, Penguin. You must feel so frustrated and tired of all of this. I wish I knew what to do and say to help, but all I can offer is my concern and hope that the flare will be over soon, very soon. Jannie is right, please call your neuro in the morning.

Ann
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Penguinrocks
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Post by Penguinrocks »

hello me lovelies.

I will call her. I don't know what she can do, but I'll call her.

I am frustrated. I was in the middle of a meeting yesterday, and I had to stop mid sentence cuz it got so bad i couldn't talk!

crying in the middle of a meeting isn't a good thing so i tried very hard to suck back the tears and breath thru the pain....

i can't quit my job, i'm the only income i have...i'd like to think i have a pretty high threshold for pain....but my goodness....this ranks right up there with my kidney stone!

love you
Penguin
Beware the Penguin

Penguinrocks
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Post by Penguinrocks »

Off for a mammo tomorrow and risk assessment. I'm going to bring up the pain in my breasts and hopefully get some kind of an answer....

i'll keep you all abreast...hee hee had to sorry.. :roll:

love you Penguin
Beware the Penguin

ViewsAskew
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Post by ViewsAskew »

Ah, you gotta love that lovely test. It falls into the same category as pantyhose - only a man could have invented it.

Hope you are feeling somewhat better.

Ann
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Penguinrocks
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Post by Penguinrocks »

you're sure right Ann :lol:

just hope i can do this without passing out from the pain that i'm sure it'll cause...

Penguin
Beware the Penguin

Penguinrocks
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Post by Penguinrocks »

Just got back from the breast clinic

Everything is nice and clear and normal! WOW. :D

Did talk to her about the fibro/rls connection and she has a plan of attack so here goes.

1. Stop ALL caffiene for 10 days. Caffiene causes breast pain.
If the pain is still there after stopping caffiene
2. Take Ibuprofen for 1 week.
If the pain is still there
3. Evening of Primrose Oil OR Flaxseed Oil. I know the flaxseed has helped with a painful cyst I had in my breast once.

Love you
Penguin
Beware the Penguin

becat
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Post by becat »

Hey Miss Penguin, Hugs and love to you.
Sorry to hear that the test was due. I hurt for a couple of days after too.
But Yeah and Amen that they came out clean and clear.
She's right about the caffiene and I'd add that aluminum to that as well.
Sometimes I just have to get some cyst drained for relief, but it's been a while for that.
I do like the flaxseed idea and have used it for years, a family thing (thanks Mom) LOL It add bulk fiber to your diet easily and it's known to help clean a person out.
if you can, the best way to take flax is as follows:
golden flaxseed organic, of course. Find in bulk at the Whole Foods Market or health food stores (larger ones that sell food items)
You need a coffee grinder or a seed grinder, but the coffee grinder is cheaper... I think $20 at Bed Bath and Beyond. A little one.
Whole flax seed maybe start out with a T. spoon.( this amount varies from person to person, so experiment) Flaxseed that is grinded must be used right then. The great thing about flax, when ground it's able to release the best of it's self, but will not last longer than an hour.
Grind it in the grinder (duh) and then add to juice or water and drink. it chewy, but it does help. Might want to increase you water intake, as well.
You can also chew it up, I use to keep a shot glass full by my computer and "snack" on it while playing games.
Or you can add to salads, just sprinkle over any salad. Don't ever heat the flax seed.
also, flax seed is something that will last for a long time, it doesn't spoil easily.
hope all goes well, love ya!

steelergal78
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Flax and no caffeine

Post by steelergal78 »

Is the flax recommendation and no caffeine JUST for pain in the breasts, or pain all over? :?:

I noticed when I stopped drinking pop for about 2 months earlier this year that I didn't have as MUCH pain. Still pain - but less. Also - I have never experienced pain while having an RLS attack. It's just VERY annoying.

My regular m.d. diagnosed me with Fibro in 1999. I stayed at a sleep clinic in 2002 and was diagnosed with insomnia and RLS and ILM. Went to a rheumo from about 1999-2002 who said I did NOT have Fibro, that I had arthritis all over. Proved him wrong with xrays and MRI's. He was supposed to be one of the best in central Ohio - NOT. :x

I'm SO interested in learning more about this Fibro/RLS connection. That is something that really needs to be investigated by the medical community more in depth. There's gotta be an answer somewhere!! :!:

Penguinrocks
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Post by Penguinrocks »

Hi,

The Flax was recommended for the breast pain only.
Beware the Penguin

atlbuzz
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Post by atlbuzz »

Not easy, but get to an Acadamic Medical Center. They're around the country, you can ususally find the reatings in US News and World Reports. Certainly on line as well. "Teaching Hospital", as they're known, are at the forefront of treatments. You'll have to get used to dealing with interns and doctors all asking the same questions, but maybe one will pick up something the others didn't.

YOU Need choices, out of the box thinking, and to them, you're one big experiment!
DAvid

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