21 years old with Fibromyalgia and RLS. Need some advice!!

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earth2kristi

21 years old with Fibromyalgia and RLS. Need some advice!!

Post by earth2kristi »

I was diagnosed, by a number of doctors, with a severe case of fibromyalgia when i was 17. I'm 21 now and Finding a doctor who will treat me has proved to be almost impossible! Just about everything i know about my condition, i have learned from my own research. It is frustrating to say the least that it has been this hard for me to find someone that will help me. I need to know the best type of doctor for me to see, and the best way to go about finding one who will understand what i'm going through.

So far the only thing that helps me is strong pain killers, but finding a good doctor who recognizes my problems and will try to help me is not working out. Im at the end of my rope. I could really use some kind words and advice right now. I don' t know if i have the strength to keep up this depressing doctor hunt. I'm wondering if there is anyone here who has, or knows anyone, who has gone through similar experiences. If anyone has any advice for me, or just some kind words, i could definately use them!!!!

Thankyou -Kristina B

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Hi Kristi and Welcome to the board.
I have to say Yeah! you already know that a good fibro and RLS education is the only way to defend yourself with what your living with.
Yes, we've have several people here that can certainly give you some advice about coping with both disorders. i'm hoping they will come on soon and add to my reply.
I only live with the RLS, thankfully. Mine is a painful form of RLS and I require pain meds as well. Nope not an easy thing to get for many people.
Since you are so young, I'm sure it's often a thought for docs that big time pain meds are not right for you......is she just looking for pills? Is this too big of a med to give to someone so young? (as in, you have a long life ahead of you) However, I would think if you've had this dx for this long, it won't be an issue.
Couple of ideas from me.
1. Now knowing what state your in or the laws about big pain meds.....i was given a copy of sorts of a narcotic contract by someone in Washington state. If your given any big pain meds there on an ongoing basis, you have to sign this contract. Now, this might be helpful for you to show your intent and your ability to manage such medications. I think for anyone having a hard time getting meds for pain or RLS, Fibro, etc relief.....this might be a great way to get the conversation going with your doc. about getting the medication and staying on it.
2. Sleep docs and Neuro's seem to be the docs that understand RLS best. Rhuematologist (sp?) are generally in the know about Fibro. And certainly pain clinics are another choice.
Anyone out there that can add to this please do.
Kristi, I hope you get a ton of replies to your post. We're a proactive group and the best support system going. You've got so much going on, I hope you know that your welcome to come here and chat with us anytime.
Hugs from Texas and you hang in there.

earth2kristi

thanks!

Post by earth2kristi »

Thankyou so much for your advice! Its comforting to know there are others. I will definately look into these options. I am from corvallis oregon, and i am not exactally sure what the laws are. This is ironic because i am a pharmacy technician. Oh well, i'll have to look into it.

Thankyou again!!!!

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Hi Kristi

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.

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jrowley
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Post by jrowley »

Hey Kristi,

So sorry for you. I enough with the rls/plmd that the fibro would put me over the edge. However I would have to say the most experience doctor for your fibro would be a rheumtologist. They rls your going to need a neuro or a sleep specialist. But if you see the rheumy first and he/she can get that under control that might take care of your rls as there might be a correlation of the two. You just might get lucky to have a secondary case of rls and your fibro is causing it. If you get the fibro undercontrol and you still have a issue with your rls then more than likely your primary and you good ole family passed it down. Good luck to you. Get to a rheumy asap the pain killers are not good for you and there are other medications that will help to control your fibro. Your way to young to be hooked on painkillers (im not saying you are either I'm just saying the possiblility is there in taking them long term). Good luck my dear and welcome to the board.
Jan :roll: Can't wait to sleep!

Penguinrocks
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Joined: Thu Mar 17, 2005 6:03 pm
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Post by Penguinrocks »

Hi Kristi

I am one of the lucky ones with the FIBRO/RLS/PLMD

Let me just tell you that it sure is one heck of a ride! :cry:

You find yourself not being able to control anypart of your life. The weather seems to create a huge part of the YUK.

I'm in the middle of a fibro flare at the moment. Last weekend, I had to clean up 18 inches of snow...so that doesn't help

I just wanted you to know that no, you're not alone...if you need great support? You've found it here!!!!!

Penguin
Beware the Penguin

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