Another question I have for you all, is how do you get any sleep at night with the Prednisone. I am at 40mg/day. and my legs want to climb the walls. I keep thinking about the same thought in my mind over and over and over and over. Sleeping pills haven't helped. What do you use for this problem.
Thanks again
CraigTry Calm magnesium drink. You mix it with hot water and drink it at night. It helped me calm my restless legs. Go to http://www.petergillham.com/
and see if this might be right for you. There is also a formula with calcium - depends on your needs. I drink this at night before i go to bed.Craig,
I had a problem with my legs which was diagnosed as Painful Restless Leg Syndrome. My lower arms ached, also. I was prescribed Ambien for sleep and Neurontin for the legs. It helped with the sleep and the need to feel like putting my legs in my pockets. We tried one of the other drugs for RLS but it gave me bad nightmares. We started at a low dose of Neurontin and increased the dose until we found one that worked.
Sometimes, I think our bodies get used to the sleep medication and it needs to be changed to another medication. The other thing I did, was not take my steroid late in the day.
If I took it with dinner, I got to watch all the great ads on TV. My daily dose is split into two doses because the second dose helps with the morning stiffness.
Keep the faith. Talk with your doctor about your legs and the "no sleeping." Without rest, the PMR symptoms get worse.
Thanks smartie101, My doctors nurse just called and said to take some magnesium/calicum supplements. They are most likely the same. I'll try them, as my wife has some on hand. Do you know is it the calcium or the Magnesium that is causing the problem. Because my Magnesium level was ok on my blood work?
I tried neurontin a few years back for some of my MS symptoms and it made me go crazy. I couldn't remember what I ate for lunch by dinner. I agree that sleep is important and I may try a different sleeping pill.
It seems that medication that work for some things just don't cut it for other things. An exsample is these restless legs. Before the PMR and prednisone I took Zanaflex for the restless legs and it worked great, but now with the same restless legs and Prednisone you wouldn't know I had take a thing.
I plan to try the calicum and Magnesium tonight and see if my nurse and smartie know there stuff. LOL
CraigSounds like a plan to me. Let me know if it works. My memory was fine until the steroids. Now, I forget the names of things. I'm on what is considered a low dose of Neurontin. The Neurontin seems to take away the anxiety caused by the steroids and is easing some of the lower back discomfort.
One other thing that helped me when I couldn't sleep from pred was to split the dose ' 1/2 morning & 1/2 night. It allowed me to sleep and also kept me from the having pain in the early morning when I was due for the next dose
Good luckHello all and good morning. Last night I did the calcium and magnesium it seemed to help for a while but I had to add the sleeping pill and a bowl of cereal(sugar pops) about 1am. Got to sleep about 2am. Tonight I plan to add more calcium and Magnesium closer to bedtime. I am currently waiting for my presdnisone to kick in, as I can hardly type on this keyboard. See you all later.
I had the same problem sleeping even if I took the Pred. in the morning. My doctor gave me Elavil to sleep at nignt--it is an old antidepressant that is not addictive. My doctor said that it works well for 'older' people and helps them sleep. I am not particularly depressed--but it really does work. Oh, it is fairly cheap as well. Oh, and another thing, I am not that old (59)
Craig, I am sorry you are having difficulty--you deserve those sugar pops (good comfort food). I hope you sleep better tonight.
Wildflower
Thanks Wildflower,
I took a new sleeping pill/relaxer and a oxycodone for some pain and I slept the best I've slept in weeks. I may try again tonight and cut the oxycodone in half. My doc says this is ok for a while until I get everything settled down.
You are not old, hell I am 55 going on 85 (so I feel). No sugar pops last night.
CraigHi Craig and all,
I am glad that the oxycodone and sleeping pill helped you. It seems as if just breaking that cycle of non-sleep is the wise thing to do, and yeah, I don't think you need to worry about taking these prescriptions either.
I was diagnosed 4 years ago at age 55, and am patiently waiting for PMR to vanish. Having said that, as long as I take the Pred. I do fairly well. Are you still on 40mg? I know when I took a higher dose I became anxious and ate anything that wasn't tied down.
I wish you a peaceful and restful night.
Wildflower
Wildflower
I hope I kick this stuff a bit quicker, I am not one to have too much patience. My doc wants me to stay at 40mg for 2 to 4 weeks. He tryed to lower me to 30 and in one day it was all back to the point I couldn't lift my arms or legs. So yep, I am very anxious and ready to climb the walls. As far as feeling bad, this PMR is worse than the MS that I have too. Boy life sure can take some crazy turns. My wife says now with all the prednisone ,the MS and the PMR I am so up tight she thinks I have PMS LOL I guess it is all in the letters. Have a good night Wildflower and hopefully tomorrow will be a better day for all.
Craig
Hi Craig,
I can only imagine how difficult it must be to have MS and PMR together--you got the double whammy. How long ago were you diagnosed with MS?
I hope your PMR experience is very brief. Sometimes I think I will have it the rest of my life, but I have to work on this negative attitude. I am around a lot of people at work and I do well there, but when I get home I more or less collapse. Yeah, your wife is probably right--these drugs do seem to produce PMR-like symptoms. My family is very patient as well and tease me about walking like a granny (which I am).
I am also working on my huge chocolate cravings, but there has to be some sort of perk for living with PMR, huh?
Be well--I am fairly new to this forum, and I have asked so many questions and have received much sage advice. If you are gonna have PMR anyway, this is a great place to be! Before this I didn't know anyone with PMR. Even though I said I would never participate in chat rooms, etc. , I am glad to say I was wrong.
Wildflower
I was given Elavil before being diagnosed with PMR. They kept telling me that I had Fibro. The doctor said that the pain, although realized, was primarly in my mind and that the pill would help me sleep and not feel the (imaginary) pain. Well, the pain increased, dried my mouth terribly and did something with the chemicals in my brain. Passed out twice, once on the stairs and once downstairs....had no idea what was happening to me...thought I lost my ability to walk. That was my one and only experience with Elavil. SusanHi Susan,
Wow, you really did have a bad experience with Elavil. That must have been awful.
My doctor told me the same thing--that my inability to raise my arms or walk up stairs was not PMR. He refused to even give me a blood test. And, no, I was not a frequent hypochondrial (sp?) patient of his. I was diagnosed by another doctor 2 months later. Even now most people I know think I have fibromyalgia or 'back problems" even after telling them about my PMR. Ultimately I just gave up and let them think what they wanted. Until this forum I have spoken with no one in depth about PMR. It is a lonely disease, so that's why this forum is important to me. Thanks everyone!
Wildflower
Wildflower,
Imaginary pain. Was that doctor from the dark ages? I've seen some fibro patients in my rheumy's office and they struggle to move and look awful from not being able to sleep and get their lives back to as a normal routine as they can or did have.
It's seens that the Doctor's are getting around to acknowledging that the pain really does exist. Just like woman and chest pains used to be blown off to stress, it takes time or someone with status to get it before it is brought to the attention of everyone.
Sadlly, PMRA and GC have been around for ages. Not much advancement in it's treatment, though. Steroids is the drug of choice. Once again, if someone in a ranking position in society gets it, you can bet it will get some public attention. It's not a blow off disease. It is a dangerous one. The pain is horrible and walking like a chimp is bad enough. We can't blame the people for their ignorance about this disease. Until 15 months ago, I had no idea this existed and I worked in the medical field. If any patients came into the ER with auto immune flare ups, they were referred as an outpatient to a rheumatologist. They were in agony. I am forever humbled.
Hi Donna,
Yes, firbromyalgia does indeed exist--I feel sorry for anyone afflicted for the obvious reasons, but also because many doctors believe it is not real. I am grateful we have a blood test for PMR.
I believe there is a reason for everything and a lesson to be learned. Maybe my lesson is to enjoy life and to know that things can change on a dime. PMR came upon me amost overnight and everything changed, and it was awful that no one 'got it'.
Yes, it would be great if there were a good alternative for Prednisone. I have taken it so long, but I am ever mindful of the 'bad drug' side of it. And yes, I believe PMR has taught me humility as well.
Wildflower
Every morning when I get out of bed and do the"chimp" walk to the kitchen saying various unprintable words as the day starts, I remember when my life was different. Mornings always started at dawn and was juggling three or four tasks. Now, it's an effort to fling the clothes into the dryer. Stand up with a cup of coffee in my hand without wearing it.
Yet, the sun keeps on rising and setting. Every morning the coctail of steroids and vitamins and life sustaining medications, goes on.
Wishing, for the days before all this started.
Donna
Hang in there, you could be getting close to the end of this stuff. I seem to be doing better with the 40mg per day and the sleeping pill.oxyconden at night. I will start the slow taper in about two weeks more. Mean while I am takeing calicum pills and vitamin D by the truck load, to help my bones withstand the presidnsone. Donna, I am not a doc but I was on neuronin for about 2 months and boy did it cause me to forget stuff. Some studies I've read show it does not do a thing to help most people but put them in a cloud. Have you talked to your doc about tapering off to zero on the neuronin. You may get your mind back.
Just food for thought.
Hope all is well
Craig
aman22008-05-04 12:12:33I am cutting down on the dose. It has helped with the legs at night. It's the prednisone that is causing the fog. Moving down on that, too. At a slower rate, of course. I keep praying every morning when I get up that it will be gone. Getting rest at night definately has an impact on how you feel.
My goal would be to not to have to take any more pills, ever. I long for taking long walks with the dogs again. My dogs are elderly, so we are perfect for each other. Slow and slower and slowest.
Hi Donna,
I agree that pred. causes that dreaded fog. I know that I forget things more easily and that it is not from old age but another side effect from pred.
I am fortunate that I can walk my dog--we walk daily in the woods and spring is so beautiful. It is good for my soul, and I wish that you will be able to take your dogs on walks soon. My dog just knows that at times we have to walk more slowly.
I have not taken my pred. today (I am down to 1mg after 4 years of higher doses). PMR is alive and well, but I just want to see how diffiuclt it will be today. Having said that, I keep thinking of long-term damage this might do to my body if I just stop pred.,OR has the Pred caused more damage than that??
It does seem that I slept somewhat better with each dose decrease. Hang in there, Donna!
Wildflower
I'm in the country, now. I walk on the side roads with the dogs. I used to have three dogs but my sweet coonhound girl, that I took in two years ago developed kidney failure and after doing all that I could, the time came to let her claim her rite to passage. She was an elderly girl when I adopted her. So, I knew our time was short. She also had neurological issues so she walked slow, too.
I stay on the paths because I am clumsy and would break something for sure. My other rescue dog, Doc is blind, so the paths are easier for him to navigate. My shepherd is older, but she likes to move at a fair pace. I have a flexible lead so she can have some fun, too.
On the slow days, I admire more of nature. It's important to keep going even when every fiber of your body is screaming "lay down fool." I get hope reading the posts from those who have been through this, longer than I. It helps to know that the set backs are normal and frustrating for everyone.
The hubby tries to be understanding, with the nights I have trouble sleeping, and with the days I cannot run around and do errands at his pace. I've learned to graciously, wait at home.
I'm at 7 mg, and still seem to over ride the sleeping medication. It seems to take hours for it to work. It maybe time to change it.
Donna,
Oh, what a good heart you have--your dogs are blessed to be with you, and I hope good memories with your sweet coonhound girl with help sustain you. My dog is one who was just dropped off by someone who didn't want her. I wasn't even a 'pet person', but I have just grown more and more attached to her.
I really don't think anyone can truly understand PMR unless they have it or have had it. I am so new here---I am almost over zealous about writing, but I have been with PMR by myself for so very long. I am somewhat technology-challenged, and so this is the first time I have ever been on a forum? blog? chatroom? I don't even know what this is
Yes, I have fallen several times in the woods. I think since PMR I don't pick my feet up as high as I should. I too don't stray from the paths. If my dog is not with me, I use walking sticks--they look rather like ski poles, and they really help with balance and upper body strength.
I hope soon you can sleep peacefully! Yeah, maybe you should try something else for sleeping. I think if you have PMR, you are sleep-deprived.
Best wishes,
Wildflower
Wonder what other's take for sleep? I've always been a light sleeper. Husband was amazed I could sleep and still ask if the house doors were locked. Dogs had gone out before bedtime. (his assignment) since he stayed up later than I did.
Now, he has learned to sleep with the TV on. I got tired of going down staris to the living room to watch TV as a diversion. Yet, it's been documented that keeping the TV on is bad for sleeping habits. I tried reading but that did not work.
Doctor wrote a script and said it was normal to not sleep with the steroids.
Donna PA
Hi Donna,
I am a light sleeper also, and I am sorry you are not sleeping well. I have had episodes like yours, and I learned not to "chase" sleep because it made me more anxious. I think you're wise to get up and do something. I believe that even my small dose of Pred. prevents me from sleeping as I should.
Have you tried Melatonin--it does seem to help me. It does something to adjust our body clock so that our brain tells us it's time to sleep when taken before bedtime.
(very scientific
Donna, I wish you well!
Wildflower
It would help to reset the internal clock. Guess when I go to the vitamin shop for the list I have to get for the animals I could throw in a few things for me. I am out walking more, although not at a brisk pace. I have my Moses on the Mountain walking stick to help out. I live on a mountain, so the trip back is steep. I also got lighter sneakers, so my feet don't feel so weighted down by the heavier ones I own now.
Donna
HI Craig,
Been there. Ask the doctor for Mirapex 1 mg (take 3 at bedtime) or Klonopin. They will knock of the leg stuff. They are used now for restless syndrome and I have been using them for a very long time now and they work like a charm. And, just and aside, I have sleep apnea so I use a CPAP machine which helps but I am overweight but even normal weight people have sleep apnea. If you sleep with someone they can tell you if you stop breathing for short periods of time. If you do have that, the CPAP makes those legs quiet down, also. My thoughts are with you.
Marlene
Hi again Marlene, I also sleep with a CPAP machine. I have lost 40#, but I still need the machine to sleep. I feel it relaxes me and is very soothing. I had 2 nights this week, I never fell asleep. My thyroid has reversed itself and is now high. The Dr is trying to bring it down slowly. I don't know if this was caused from the PMR and short time I was on Pred. Thankgoodness I am retired and I can take a nap during the day. I have been trying to get out and walk when the weather is good, but I go to bed and will look at the clock every hours telling myself this is crazy. The Dr did give me Ambian, but I don't like to take it every day. Thanks for listening. Geri
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