RLS and Fibromyalgia/CFS Combination

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.
cmoore1958
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RLS and Fibromyalgia/CFS Combination

Post by cmoore1958 »

I was just wondering how many of us are out there that have RLS and Fibromyalgia/CFS? I know that having both is a real challenge as they tend to feed off of each other sometimes.

My fibro pain, weakness and fatigue is pretty constant, my RLS has just now started getting worse. I happen to think I may be augmenting and will be discussing with my neuro soon. I am able to stop the creepy crawlies with vicodin right now but am just treating the breakthroughs at this point.

I never know when the RLS and PLMD are going to hit, it's different every day. Sometimes it lasts only 1/2 hour or so, other times it lasts for hours and hours.

The combination of both disorders is also playing havoc on sleep -- or lack of it. I already don't sleep well with the PLMD. Add to that the rls flare ups and the fibro and I can't remember when I've had a good night's sleep. I find myself falling asleep at my desk at work, waking up and not remembering what I'm working on or knowing how long the episode lasted. I've been typing an email to a co-worker or customer and all of a sudded find I've changed the subject in the middle to talking about my nephew to my sister. Thankfully I caught that one, but worry there may have been some I didn't catch.

I know my meds will change when I go to my neuro Feb. 25th - I'm going to insist on it. I'm just curious what combinations others with fibro and rls take and how they work. I do know that what works for one person does not work for another. Right now I'm researching everything so I am ultra informed when I go to my neuro.

Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

becat
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Post by becat »

Hi Miss Cyndi,

I have the PLMD part and I never notice it until it's really bad, thank goodness. Or until I bruise the hubby.... :oops:, kick the cat right off the bed, those are my signs things are no longer manageable. LOL

I don't have fibro and sorry to hear that you do.

I'm hoping that Ruby or Jan will see this as they have studied up far more than I on the subject.
I do know that they have written a book called Fibromyalgia for Dummies. Funny name, but some really very good information in it.

I hope You find something to help until your appt. and I'll try to get Ruby or Jan to offer up some info when they stop by, as well.

Hope the rain is not your way, and the legs give you some peace soon.

Lynne

jan3213
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Post by jan3213 »

Hey Cyndi

I was coming back on here to answer your post and saw that Lynne had already started.

She's right--Ruby does have fibro. They thought I did before my back surgery, but turns out, it was my back back--all those herniated discs.

However, I do know that a lot of people have both fibro and RLS. And, from what I can tell from listening and talking to others who have both, sometimes RLS comes first--sometimes fibro comes first. I do know, however, that the fibro pain is pretty constant and hits all over your body and RLS is not as constant--at least in the early stages. I also have painful RLS, although not as severe as Lynne and others.

It is the pits! Poor Ruby has a terrible time. If she doesn't come on here, try PMing her. She probably has email alerts when she gets a PM. She'd be more than happy to answer any questions you have.

I really hate to hear that you are suffering so much, Cyndi. I know what it is like to go without sleep. You can't function. I remember one time coming out of the dentist's office, forgetting where I'd parked my car and honestly thinking someone had stolen it! I was ready to call the police when--ooops! there it was right where I'd parked it. Geeze! I've fallen asleep in public places, at work, anytime I sat down and quit moving. I recently had a sleep study--my 3rd one. My neuro thought I might have narcolepsy. Turns out I don't (thank God!). My body was just exhausted and had gotten used to no sleep. I am happy to say I am sleeping much better now.

This has turned out to be much longer than I intended (sorry!). Just want you to know that I understand and, though I may not really be able to help, I'll sure be thinking about you! I hope you get some meds that will be help you sleep. And, think about PMing Ruby.

Hugs to you
Jan
No one is alone who had friends.

Polar Bear
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Post by Polar Bear »

i don't have Fibro, tho I have a friend who suffers. It is bad enough dealing with one condition !! my heart goes out to you.


Betty
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SquirmingSusan
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Post by SquirmingSusan »

I have a diagnosis of fibro on my medical chart from my primary doctor, but I don't think I have it. I may have some of the tender points - my doctor pushed on some places that about made me scream. But really what I have is more like Chronic Fatigue syndrome. Just exhausted beyond belief, like some days it's hard to get out of bed to walk to the bathroom. I feel like I'm buried in sand or something. The body just has no energy. No pain, though, unless it's my legs acting up. But like someone sucked the energy out of me.

I've heard cancer patients describe the fatigue that comes with radiation treatments. One guy said that his TV was turned to some kind of "girly" show like a fashion channel or something like that. He said he watched it for 3 days because he didn't even have the energy to lift the remote and change the channel.

That's how I am when it really gets bad. Fortunately it's not often THAT bad. That's why I started a business that I can work at when I have the energy and not try to have to function all day in "normal" business hours.

I have no idea how some of you can keep working regular jobs with all of this going on. You must just be so utterly exhausted.
Susan

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Post by SquirmingSusan »

Another thought. I'm sure she's wrong and was just spouting something she had heard somewhere, but my primary doctor referred me to a rheumatologist, and told me that he would deal with the RLS thing as well because "fibro and RLS are all part of the same syndrome." I think she's technically wrong, but there are a lot of commonalities between the two. Apparently fibro is also related to low brain dopamine function.
Susan

cmoore1958
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Post by cmoore1958 »

I have been doing a lot more research on fibro and found that the scientists are now thinking that FMS and CFS are the same disorder. Some people have pain with their fibro and other don't have much at all except for their legs (which is sometimes confused with the rls pain). The studies I read said that when people are only suffering the exhaustion they are diagnosed with CFS. They seem to think that the diagnosis a person receives is based on what the chief compaint is at the time. I don't know if I buy into all of that, but I do know the CFS does go hand in hand with the FMS if that is the first diagnosis.

I don't know if my FMS/CFS or RLS started first . . . it seems they started at the same time. I know the rough spots have to be worked through and I usually deal with it okay . . . it's only when both go bonkers at once that I could just scream. I think it was Sardsy who said "give me a chain saw"! :lol:

We don't have a support group in Katy but there is one inside Houston (pretty time consuming drive). I have contacted the RLS foundation and have applied to be a support leader. I already have 3 other people in Katy interested in this. I'm encouraging them all to join the board right now and hope they do.

Thank you all for your concern and support -- it really does mean a lot.

I'll think I'll take some very wise advice given earlier today and PM Ruby this afternoon.

Thanks again.
Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

ctravel12
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Post by ctravel12 »

Hi Cyn you sure got some good advise and please pm Rubyslipper. She is absolutely the nicest person you would ever want to talk to. Unfortuntately I have not had the opportunity to meet with her in person but heard she is just an angel.

I know we have chatted alot and cetainly do enjoy them. I wish that I could take the pain away as I would. It is bad enough to rls/plmd and then having fibro on top of all of it.

I say prayers for all of the rls family (you and Lora are definitely family) everynight. You take care my friend and hope that you are feeling better today.
Charlene
Taking one day at a time

cornelia

Post by cornelia »

Hi Susnan, I'm in exactly the same boat as you are, have been for the last 6 years. My body just has no energy and I want it so badly!! It's not going to happen, unless research catches up. In 2003 I was tested for CFS, no way I had it. The fatigue is from RLS/PLMD and the meds (I think). Dr B thinks that people with RLS who think they are sufferng from CFS probably not have it. Because when their RLS is dealt with succesfully the chronic fatigue goes away. As we know severe, refractory RLS can be hard to deal with succesfully and that is why we have to live this way IMO. As Ann has written in her chapter on RLS and relationships in dr B's book: we are trapped in our body and our homes.

Corrie

SquirmingSusan
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Post by SquirmingSusan »

I do think that's right, Corrie, that the fatigue is from the bad quality sleep and the medications. I know that there are days when I sleep well, and I have so much more energy. And others when I just can't move all day. It's horrible. Trapped is right. I love getting out and doing things and I love having people over for dinner and such. But it's a struggle to make social connections when some days I don't even want to pick up a phone.

When I had my little surgery in December they knocked me out cold with Phentanyl, Valium, and barbiturates. They told me I slept with a smile on my face. I must have gotten some good, deep sleep, because when I woke up, I had energy all day.

In an email, Dr. B suggested I try Provigil, but I can't get a doctor to prescribe it for me. I know they also use it to treat chronic fatigue and I've heard people say that it works well.
Susan

cornelia

Post by cornelia »

Exactly the same applies to me Susan. Social life extremely difficult, almost non-existent. Before RLS I was a very acive social person, but that has gone.

I spoke to my neuro to try a DA again as an add-on. Low dose OxyContin + 900 mg Neurontin doesn't work anymore. I don't sleep before 0230, after that only for a few hours. I am allowed Requip 0.25 mg twice a week for a month to try. I have done that twice now and I really feel better, bit more energy and not so weak. I think the opioids make me feel so weak. Still, like Ann, I don't want it everyday (yet) because of augmentation issues and because I want to keep my 'DA receptors' clean until I have to stop opioids one day. Maybe I will ask my neuro if a regimen of 1 night Oxy/Neurontin + a bit of Requip, 1 night + a benzo and one night without these add-ons and suffer.

And so we struggle on...

Corrie

cornelia

Post by cornelia »

O, and Susan, my neuro doesn't want me to try Provigil too. Corrie

ViewsAskew
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Post by ViewsAskew »

Make it three for NO provigil...the last doctor said I should just use some caffeine as I hadn't had any regularly for years. It does work and the methadone keeps the RLS under control, but I am so sensitive to it, that I get withdrawal headaches after just one of two days of using it.

My current doctor also will not give it. I don't think I even asked why that time.
Ann - Take what you need, leave the rest

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SquirmingSusan
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Post by SquirmingSusan »

What's up with not wanting fatigued people to use Provigil? There was a thing on television comparing Provigil to coffee, and coffee worked better, although the Provigil doesn't make people jittery. Oh well, now I have my family trained to bring me a nice cup of Chai about noon.

I'm grateful that most days now, by evening I'm OK. We pulled off having friends over for dinner last night because my dh did the cooking. By the time they came, I could function. I've decided that if people want to see me, they sometimes will get me in a trashed, incoherent state. And the house is a mess; there's no fixing that unless my kids develop a sudden love of household chore. Sorry, I'm getting way off topic here. But it's just to say that it's possible to still see friends, but not in the same ways that we used to, or in the way we would like.

I really do hope you can find a combo that works for you, Corrie, and that helps you get some energy.
Susan

cmoore1958
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Post by cmoore1958 »

Prescribing caffeine for people that are not affected by it is like prescribing a baby aspirin. I have never been affected by drinking or eating with caffeine in it. I wish I was, then all the coffee I drink would go to some good. :)

I wonder what the dear doctors have to say about that scenario?

Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

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