My daughter who lives with us has a severe case of fibromyalgia. Suspiciously many people in this survey also have or are suspected to have fibromyalgia.
Have you had the classic test for FM where 18 pressure points on the body are tested with a well-defined pressure (force per area)? Where a certain number (11?) has to be pressure-sensitive for a positive diagnosis for FM?
How effective do you find VIOXX? Is it for you a typical NSAID?
Your rheumo seems to be open-minded about RLS which is good.
Do you think you need methadone on top of Tylenol 3? For some reason codein and codein derivatives seem to be highly effective for RLS!
You are right, controlling pain and assuring a good night of sleep are both important to assure a quality of life for yourself.
BTW, if you really have an open-minded physician, he/she may be able to prescribe for you XYREM, a sleep aid that assures prolonged restorative sleep. One thing fibromyalgia patients seem to lack!
Is there anyone like me?
Hello, Elfrieda:
Jumpy Owl
FMS
Jumpy,
In many books on FMS there is mention of RLS as one of the symptoms of FMS. That's all I knew about it before I found this forum. So I'm not surprised that many people have both. Many people I know who have FMS as their primary condition also have RLS.
I'm taking the Neurontin and Methadone (just started today) on a regular basis. I'm trying to hold off on the codeine and keep it for migraines. I also have Vicodin for back up on the migraines which have at times put me in the ER.
Yes, I had the tender point test years ago when first diagnosed with FMS. I've had it recently, too.
Vioxx was a waste on me. It didn't touch any of my pain.
Your daughter might be interested in a couple websites I like.
http://www.fmpartnership.org/
and
fibrohugs.com
Elfrieda
In many books on FMS there is mention of RLS as one of the symptoms of FMS. That's all I knew about it before I found this forum. So I'm not surprised that many people have both. Many people I know who have FMS as their primary condition also have RLS.
I'm taking the Neurontin and Methadone (just started today) on a regular basis. I'm trying to hold off on the codeine and keep it for migraines. I also have Vicodin for back up on the migraines which have at times put me in the ER.
Yes, I had the tender point test years ago when first diagnosed with FMS. I've had it recently, too.
Vioxx was a waste on me. It didn't touch any of my pain.
Your daughter might be interested in a couple websites I like.
http://www.fmpartnership.org/
and
fibrohugs.com
Elfrieda
I shall research them!guarded optimism
Today I had very little of my horrible restless feelings. I am beginning to think that my new drug combination might help. I had my usual 1200mgs of Neurontin and my half pill of Methadone. I only needed a half Tylenol 3 twice today to keep the feelings at bay. I have been doing something like three Tylenol 3 a day to just make it through.
I was not as fatigued as I have been ( I think the Neurontin is helping there); I had my standard level of pain (both from the FMS that I have) but to not feel like all of my insides were squirming around and ready to break through my skin is some accomplishment.
I say I have guarded optimism because I have had some rare good days in the past few months since this came on me. When I have had several in a row, I'll be more confident of the drug combination.
Next week I raise the dose of Methadone to a one pill a day. The week after two a day. My doctor is taking it slowly because of my sensitivity to meds.
Elfrieda
I was not as fatigued as I have been ( I think the Neurontin is helping there); I had my standard level of pain (both from the FMS that I have) but to not feel like all of my insides were squirming around and ready to break through my skin is some accomplishment.
I say I have guarded optimism because I have had some rare good days in the past few months since this came on me. When I have had several in a row, I'll be more confident of the drug combination.
Next week I raise the dose of Methadone to a one pill a day. The week after two a day. My doctor is taking it slowly because of my sensitivity to meds.
Elfrieda
Hi, Elfrieda:
I quote from my earlier post derided from the Algorithm of RLS treatment:
Well, your story is a bit different but you and your doctor still can follow the logic in their advice.
1. Since you started with Neurontin (am I correct?) you could switch to a dopamine agonist
2. You could change to a different anticonvulsant. Some (a few people) found Topamax helpful, but there are other kinds, better known.
3. You could add a third type of agent which would be Mirapex or Requip (sorry I do not remember whether you tried these, but even if you did adding it to your present regimen would be different).
4. You are already on two opioids (one for breakthrough pain). I think that instead of raising the dosage of the pain killers, you perhaps could do better or as well by adding a dopamine agonist and decrease the dosage of one of the opioids (Tylenol 3), which you are doing anyway.
From my experience, codein (in Tylenol 3) and other codein derivatives are quite effective in controlling RLS sensation. For me it was hydrocodone and finally I could replace it with a Mirapex + tramadol combination. I wanted to prove that the return of the RLS symptoms were not just withdrawal effects from Hydrocodone. I also tried Neurontine and Hydrocodone combination., which worked well enough but I did not like the side effects of Neurontin.
All these are just suggestions to discuss with your doctor. I am in no position to give medical advice!
DEFINITION OF REFRACTORY RLS
It is a daily RLS that is treated with a dopamine agonist with one or more of the following outcomes:
o Inadequate initial response despite adequate doses
o Response that has become inadequate with time despite increasing doses
o Intolerable adverse effect
o Augmentation that is not controllable with additional earlier doses of the drug
TREATMENT OF REFRACTORY RLS
Medications
1. Change to gabapentin/Neurontine from dopamine agonist
2. Change to a different agonist
3. Add a second agent such as gabapentin, benzodiazepine, or an opioid
4. Change to high potency opioid or tramadol
Well, your story is a bit different but you and your doctor still can follow the logic in their advice.
1. Since you started with Neurontin (am I correct?) you could switch to a dopamine agonist
2. You could change to a different anticonvulsant. Some (a few people) found Topamax helpful, but there are other kinds, better known.
3. You could add a third type of agent which would be Mirapex or Requip (sorry I do not remember whether you tried these, but even if you did adding it to your present regimen would be different).
4. You are already on two opioids (one for breakthrough pain). I think that instead of raising the dosage of the pain killers, you perhaps could do better or as well by adding a dopamine agonist and decrease the dosage of one of the opioids (Tylenol 3), which you are doing anyway.
From my experience, codein (in Tylenol 3) and other codein derivatives are quite effective in controlling RLS sensation. For me it was hydrocodone and finally I could replace it with a Mirapex + tramadol combination. I wanted to prove that the return of the RLS symptoms were not just withdrawal effects from Hydrocodone. I also tried Neurontine and Hydrocodone combination., which worked well enough but I did not like the side effects of Neurontin.
All these are just suggestions to discuss with your doctor. I am in no position to give medical advice!
Jumpy Owl
If it ain't broke...
I finally found something that seems to be giving me some relief from the terrible pain of FMS plus the weird sensations I was experiencing without a lot of side effects. I'm happy. I don't think I'll tamper with it. 
Elfrieda
Elfrieda
Elvira!
Point is well taken. I did not realize you were happy with it. Sorry for messing with your success story. 
Jumpy Owl