I am having a lot of luck with my medication for RLS, but I have a problem in that a lot of times I feel like someone just pulls my plug. Its worse if I do too much. Today, I went to town and came home, did a bit of housework, then all of a sudden I just knew I was going down for the count. I went to bed and slept 4 hours.
Almost every day, I'll just suddenly get so tired I pass out. I can't stay awake if I WANT to.
I was reading about CFS, and that sounds like me, but I just don't know if it is the RLS meds or what doing it. I've been like this for about a year though, even before I went on the meds. The meds maybe make it a bit worse, but I don't have all the pain I was having at night anymore.
Anyone know anything about this?
Is it possible to have both CFS and RLS?
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Kris
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Hi Chris. I've been diagnosed with both RLS and CFS. I also have severe fibromyalgia (source of debilitating pain for me) and the CFS goes hand in hand. I know exactly what you mean about overdoing and paying the price. Since I only get about 4 hours of sleep a night, I tend to do things (shower, dry my hair and do a few 'chores') prior to 9am. Anything else I am able to do is a bonus, but often times if I attempt to do to much, I am in bed recouperating for a day or two. I've learned how to balance my activity, when to say no, when to ask for help, and when to 'takes me chances' when there is something else I really want to do (garage sales, grocery shopping, errands, or making an evening meal).
You are fortunate that you are able to get to nap during the day. Often times by noon I am exhausted and in need of sleep. Instead, the minute my eyes close, the movement starts and prevents me from falling asleep, just like at night. Naps, for me, are out of the question! My advice, sleep/nap if and when you can. Sleep is restorative and if you are suffering from the pain of fibromyalgia and CFS, a nap will do you good!
Best of luck to you Kris.
You are fortunate that you are able to get to nap during the day. Often times by noon I am exhausted and in need of sleep. Instead, the minute my eyes close, the movement starts and prevents me from falling asleep, just like at night. Naps, for me, are out of the question! My advice, sleep/nap if and when you can. Sleep is restorative and if you are suffering from the pain of fibromyalgia and CFS, a nap will do you good!
Best of luck to you Kris.
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cornelia
KRIS,
I'm not sure about you having CFS.
In another thread I read that you are on Mirapex and Neurontin. How much are you on? I am on 1mg Requip and 1200mg Neurontin. I have the same problem as you have. Two years ago I also thought that I had CFS and I was tested for it. It wasn't the case. I now know that the Dopamine Agonists and Neurontin both take away my energy. Mirapex on its own is known for its ability to make people fall asleep, but most of the time on the higer doses. I have no energy at all. Thay is why I had to give up my job. I was denied disability twice and now a lawyer is working on the case (I live in The Netherlands, Europe). I don't fall asleep during daytime however, because RLS is there all the time (LOL) I take Tramadol during the daytime, which gives me some energy, enough to be able to do the shopping myself.
If you exchange either Neurontin or Mirapex (I think Mirapex it should be, but not sure) for Tramadol (Ultram) it will give you more energy.
Corrie
I'm not sure about you having CFS.
In another thread I read that you are on Mirapex and Neurontin. How much are you on? I am on 1mg Requip and 1200mg Neurontin. I have the same problem as you have. Two years ago I also thought that I had CFS and I was tested for it. It wasn't the case. I now know that the Dopamine Agonists and Neurontin both take away my energy. Mirapex on its own is known for its ability to make people fall asleep, but most of the time on the higer doses. I have no energy at all. Thay is why I had to give up my job. I was denied disability twice and now a lawyer is working on the case (I live in The Netherlands, Europe). I don't fall asleep during daytime however, because RLS is there all the time (LOL) I take Tramadol during the daytime, which gives me some energy, enough to be able to do the shopping myself.
If you exchange either Neurontin or Mirapex (I think Mirapex it should be, but not sure) for Tramadol (Ultram) it will give you more energy.
Corrie
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Kris
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I was having this problems way before I ever started either the Neurontin or the Mirapex. I'd actually say it is a bit better since going on the Neurontin since I am sleeping better at night.
I take 1800 neurontin a day, and .25 Mirapex. The doc wanted me on more but I stoped at .25 because it was working there and I got sick and felt like my brain was burning when I took more. That's the best way I know to describe it.
Someone told me that if you have severe neuropathy that it can take a lot more energy because the nerves are messed up. I do have severe tarsal tunnel syndrome with bad nerve damage. It does cause chronic pain that can be tiring at times in itself.
I dunno. I know when I take ultracet I feel more awake and like doing a lot more and I don't need as much sleep. (10 hours vrs 14 or 16.)
The sleeping a lot and just getting exhausted after doing things (like going to a flea market or shopping, for example) came on gradually but it does seem to be worse when the pain in my foot and lower leg is the worst.
Would love any insight. I feel bad. I don't like taking pain medication every day, but I can't get ANYTHING done if I don't. I don't feel addicted - I don't crave it or anything. If I don't take it though, I just get totally exhausted.
I take 1800 neurontin a day, and .25 Mirapex. The doc wanted me on more but I stoped at .25 because it was working there and I got sick and felt like my brain was burning when I took more. That's the best way I know to describe it.
Someone told me that if you have severe neuropathy that it can take a lot more energy because the nerves are messed up. I do have severe tarsal tunnel syndrome with bad nerve damage. It does cause chronic pain that can be tiring at times in itself.
I dunno. I know when I take ultracet I feel more awake and like doing a lot more and I don't need as much sleep. (10 hours vrs 14 or 16.)
The sleeping a lot and just getting exhausted after doing things (like going to a flea market or shopping, for example) came on gradually but it does seem to be worse when the pain in my foot and lower leg is the worst.
Would love any insight. I feel bad. I don't like taking pain medication every day, but I can't get ANYTHING done if I don't. I don't feel addicted - I don't crave it or anything. If I don't take it though, I just get totally exhausted.
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Kris
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- Location: www.wiresplice.com
I have to have the neurontin for the foot. Its awful without it. It still hurts with it. I also use lidocaine patches but they are so high that I can't afford to use them all the time.
I do take ultracet and sometimes lorcet. My doctors were always stingy with pain medicine until after they saw my MRI. Then they started giving me a lot of ultracet and even darvocet but they are still stingy with the lorcet. I don't take it that often - I've taken 22 of them over the last 6 months, and I'm about out and just dreading to have to ask for more.
The darvocet is too strong. I've still got all of it. I don't want it.
I feel so much better when I take the pain meds though. Not high or anything, just like doing stuff - more like washing dishes, more like working...more like everything. I try not to take it everyday though. I take it when I really need to make sure I get stuff done.
I don't know - am I getting addicted and don't know it, or is my pain maybe not managed very well? Sometimes I think my pain is just not managed well. I deal with it everyday - it was awful when it was both the old injury damage and the rls, it is better now.
Today I knocked my toe on something. I think I broke it. I didn't feel it because of the neuropathy and then saw blood everywhere a bit later and freaked because I thought I'd cut my toe off. It was the whole toenail just torn off. I think I broke it. It didn't hurt at all but tonight my foot is throbbing all over. That nerve does that. I'll pay for a week like all heck I know. I finally took a lorcet, but I hated too because I only have a few left and they are like gold to me.
I am a bit scared of pain meds because my mother got very addicted to morphine when I was young until I was a teenager. I'd never want to put my son through that.
I appreciate any insight. I'd love to get a handle on this because I am so tired all the time day and night when I get out and do anything. I feel like a big whiney baby and I hate it but something is just not right with me still.
I do take ultracet and sometimes lorcet. My doctors were always stingy with pain medicine until after they saw my MRI. Then they started giving me a lot of ultracet and even darvocet but they are still stingy with the lorcet. I don't take it that often - I've taken 22 of them over the last 6 months, and I'm about out and just dreading to have to ask for more.
The darvocet is too strong. I've still got all of it. I don't want it.
I feel so much better when I take the pain meds though. Not high or anything, just like doing stuff - more like washing dishes, more like working...more like everything. I try not to take it everyday though. I take it when I really need to make sure I get stuff done.
I don't know - am I getting addicted and don't know it, or is my pain maybe not managed very well? Sometimes I think my pain is just not managed well. I deal with it everyday - it was awful when it was both the old injury damage and the rls, it is better now.
Today I knocked my toe on something. I think I broke it. I didn't feel it because of the neuropathy and then saw blood everywhere a bit later and freaked because I thought I'd cut my toe off. It was the whole toenail just torn off. I think I broke it. It didn't hurt at all but tonight my foot is throbbing all over. That nerve does that. I'll pay for a week like all heck I know. I finally took a lorcet, but I hated too because I only have a few left and they are like gold to me.
I am a bit scared of pain meds because my mother got very addicted to morphine when I was young until I was a teenager. I'd never want to put my son through that.
I appreciate any insight. I'd love to get a handle on this because I am so tired all the time day and night when I get out and do anything. I feel like a big whiney baby and I hate it but something is just not right with me still.
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ViewsAskew
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Kris, so many doctors still don't get the whole chronic pain thing. Many studies show that people who are treated appopriately for pain are rarely if ever addicts. They may get physical dependence - your body gets used to a drug and goes through a withdrawal if taken away. But, heck, I had withdrawal from Mirapex, and all of us on benzos now just how much physical dependence there is! Opioids can be addicting; with pain it's less likely, with RLS it is unlikely. Actually, a strong opioid like methadone is less likely to cause addiction because it doesn't have an 'high' that goes with it. I just did a search and found this link about pain and using opiods to treat them: http://www.acponline.org/journals/news/ ... erance.htm and some more good information here:
http://www.painfoundation.org/page.asp? ... iction.htm
Since your insurance is so expensive, I am guessing that your husband is also self-employed or is not offered insurance through work. That is so hard. My DH and I are both self-employed, but we have insurance through a union for people that are self-employed. We have incredible coverage and low co-pays ($10) and great drug benefits and the cost is bearable. But it is only available in Chicago area, I think.
Finding a doctor that understand chronic pain may be the best thing you can do. Chronic pain in itself is disabling. So may doctors have a poor understanding of pain and drugs, and are afraid to deal with it. My PC wouldn't give me methadone for my RLS 6 months ago, even when I had a letter from Dr B saying it was the only way to help me at that time. It took 5 more doctors before I was successful. If Ultracet works for you, it's not even an opioid! It would be great if you could find someone that could see the larger picture.
Ann/Il/45
http://www.painfoundation.org/page.asp? ... iction.htm
Since your insurance is so expensive, I am guessing that your husband is also self-employed or is not offered insurance through work. That is so hard. My DH and I are both self-employed, but we have insurance through a union for people that are self-employed. We have incredible coverage and low co-pays ($10) and great drug benefits and the cost is bearable. But it is only available in Chicago area, I think.
Finding a doctor that understand chronic pain may be the best thing you can do. Chronic pain in itself is disabling. So may doctors have a poor understanding of pain and drugs, and are afraid to deal with it. My PC wouldn't give me methadone for my RLS 6 months ago, even when I had a letter from Dr B saying it was the only way to help me at that time. It took 5 more doctors before I was successful. If Ultracet works for you, it's not even an opioid! It would be great if you could find someone that could see the larger picture.
Ann/Il/45
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Kris
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After readin those articles I feel better. I only take maybe 1 ultracet a day - not every day. I've done so for the last year or so. Actually, I usually take tramadol without the tylenol with it. Sometimes just a tylenol works ok for a while, and then I take a tramadol. I have never had to increase my dose.
I think I need to insist that I see a chronic pain doc. I am just not good at talking to doctors. I often feel like they are the enemy - the obstacle to me getting better. Just another hurdle and I'm too tired to jump.
No, my husband works for a pretty big company, and our insurance was GREAT - but then they went and changed it. Its just been awful. We didn't have any choice but to go with it or do without.
They changed us to BC/BS POS which means piece of hahaha. You got it! The increased our co-pays, and went up on our premiums. For a long time we had decent insurance, then WHAM.
I asked my GP to give me a referral to a pain management doc, but she wouldn't do that. Said she wanted me to see my ortopedic surgeon again. It is so hard to get in to see him that I have to wait 3 months on an appt. When I did see him, he said my prognosis was bad for surgery on my ankle for both my problems, that it was not something he thought was going to get fixed, and then he just sent me back to the neurologist. When I try to ask my neurologist for this or that (like for my parking permit or my lidocaine patches), he tells me to ask my GP! Everytime I get passed around, that is just more and more money that I spend spinning my wheels.
I know that they can usually do surgery to release tarsal tunnel, but I've had mine for 9 years now, and my talus bone was broken 9 years ago, and it wasn't caught, so its got a big hole and cycst in it and the cartlidge is pushed off or something too I think. I whined and whined with that foot 9 years ago and everyone they sent me in circles to then said it was FINE. NO BREAK. It will get better. Yeah, right.
I'm angry at docs. I think they pic up on that and want me to suffer for it. lol
I think I need to insist that I see a chronic pain doc. I am just not good at talking to doctors. I often feel like they are the enemy - the obstacle to me getting better. Just another hurdle and I'm too tired to jump.
No, my husband works for a pretty big company, and our insurance was GREAT - but then they went and changed it. Its just been awful. We didn't have any choice but to go with it or do without.
They changed us to BC/BS POS which means piece of hahaha. You got it! The increased our co-pays, and went up on our premiums. For a long time we had decent insurance, then WHAM.
I asked my GP to give me a referral to a pain management doc, but she wouldn't do that. Said she wanted me to see my ortopedic surgeon again. It is so hard to get in to see him that I have to wait 3 months on an appt. When I did see him, he said my prognosis was bad for surgery on my ankle for both my problems, that it was not something he thought was going to get fixed, and then he just sent me back to the neurologist. When I try to ask my neurologist for this or that (like for my parking permit or my lidocaine patches), he tells me to ask my GP! Everytime I get passed around, that is just more and more money that I spend spinning my wheels.
I know that they can usually do surgery to release tarsal tunnel, but I've had mine for 9 years now, and my talus bone was broken 9 years ago, and it wasn't caught, so its got a big hole and cycst in it and the cartlidge is pushed off or something too I think. I whined and whined with that foot 9 years ago and everyone they sent me in circles to then said it was FINE. NO BREAK. It will get better. Yeah, right.
I'm angry at docs. I think they pic up on that and want me to suffer for it. lol