pain everywhere what do I do?

[Sydnee]

I started PD sept 2013 the first couple of months were ok. Then I started feeling awful pretty much all the time. In December I told my neph that if I don't start to feel better I would stop doing dialysis. He, Ed and my kids convinced me to give home hemo a try. (this was the first time the neph actually heard me when I said how I felt.) In January I started getting horrible, painfully twitches /cramps shortly before the first fistula surgery.
These cramps/ restless muscle would happen any time of day or night. they are getting worse and worse. The neph has tried to help first benadryl which did nothing, then with 2 different restless leg meds either worked, then with 1 fill of hydracodone (which worked, but he didn't want to keep me on it.) then with ambien (it was tried this last week) ambien made the cramps much worse. After that didn't work he told me he would be doing nothing more and I should ask a primary doctor (I don't have one and he knows that)
Since Tuesday when I tried the ambiem I have been averaging 1-2 hours of sleep a day.
I feel like I am dieing, last night things got much worse and Ed decided I better go to the hospital. The cramps were affecting my fistula (which just got revised, but not used yet).
while at the hospital everyone treated me like a junkie wanting a fix, except the ultasound tech. we spent nearly 5 hours there with no help.
I am so frustrated and hurting, I can no longer trust my self to drive or do much of anything because of the lack of sleep which is because of my pain. I have bruises all over my body because of the cramps, and when both my upper and lower leg cramp at the same time my knee dislocates.

We have tried a bunch of different home remedies too.
I can't last long like this.

[PrimeTimer]

For the leg cramps, you might want to hobble to the kitchen fridge and try some chilled Tonic Water with low sodium and quinine in it. Tastes awful at first but after a couple times, you get use to it. It works VERY FAST for those bad leg cramps in the night. People also use it when they get cramps while on dialysis. It replaces the electrolytes in your system FAST. I also take Gabapentin, gotta be careful on that tho, a dose of 300mg or more makes you sleepy but then again, if it's sleep you need then it will be sleep that you'lll get on that dose. It's also cheap. Next and one of the biggest things that help my leg cramps is heated rice bags. I put rice in a cotton tube sock and tie it and then nuke it in the microwave for 1-2 minutes. Be sure to keep a small cup of water in the microwave with the rice bags so that the rice won't burn...the cup of water creates moisture. Then I lay the rice bags between my knees. Another tip...rolling a bathtowel or small pillow or bed pillow that can be rolled up like a tube and placing it behind both knees when you lay in bed. For some reason, having my knees slightly elevated but with a firm rolled up towel or pillow under them makes the "restless leg syndrome" go away and I fall asleep. Or the hot rice bags take away pain, I'm like a new person after sleeping with rice bags! Good luck! There are no laws saying we must live in pain so I am sure we can figure out ways to get thru it! Thousands do...so can we!

And oh, by the way, years back when I had cramps that left bruises on my calves, doc said I needed to increase my potassium AND Vitamin D intake. I began eating more bananas and drinking more milk and she was right...no more cramping or bruising.

[obsidianom]

I started PD sept 2013 the first couple of months were ok. Then I started feeling awful pretty much all the time. In December I told my neph that if I don't start to feel better I would stop doing dialysis. He, Ed and my kids convinced me to give home hemo a try. (this was the first time the neph actually heard me when I said how I felt.) In January I started getting horrible, painfully twitches /cramps shortly before the first fistula surgery.
These cramps/ restless muscle would happen any time of day or night. they are getting worse and worse. The neph has tried to help first benadryl which did nothing, then with 2 different restless leg meds either worked, then with 1 fill of hydracodone (which worked, but he didn't want to keep me on it.) then with ambien (it was tried this last week) ambien made the cramps much worse. After that didn't work he told me he would be doing nothing more and I should ask a primary doctor (I don't have one and he knows that)
Since Tuesday when I tried the ambiem I have been averaging 1-2 hours of sleep a day.
I feel like I am dieing, last night things got much worse and Ed decided I better go to the hospital. The cramps were affecting my fistula (which just got revised, but not used yet).
while at the hospital everyone treated me like a junkie wanting a fix, except the ultasound tech. we spent nearly 5 hours there with no help.
I am so frustrated and hurting, I can no longer trust my self to drive or do much of anything because of the lack of sleep which is because of my pain. I have bruises all over my body because of the cramps, and when both my upper and lower leg cramp at the same time my knee dislocates.

We have tried a bunch of different home remedies too.
I can't last long like this.

Can you tell us more about your medicines and type of home hemo? If it is Nxstage what are your parameters like volume, time , days on machine, speeds etc. What other medical conditions ? The more you give info the better. How old and how much do you weigh etc.

[Charlie B53]

........................
And oh, by the way, years back when I had cramps that left bruises on my calves, doc said I needed to increase my potassium AND Vitamin D intake. I began eating more bananas and drinking more milk and she was right...no more cramping or bruising.

I used to take quinine capsules for chronic leg cramps but they have quit prescribing them, too many problems even tho I never had a problem with them.

I have massive chronic pain from being a guy, too many permanent injuries.  It's a wonder I have survived much that I have put this poor body through.

I just saw the pain specialist this week and finally have been put on the fentenyal patch.  It's the smallest and barely makes any difference, but he said he will not increase it for at least 90 days.

I am still taking tramadol, 400 MG daily, it does make a difference, just not enough.

Dr pointed out that my Vitimen D was barely detectable on my last labs, that D is essential for controlling pain.  I don't know how, or why, but he prescribed a massive Vit D supplement to be taken only once a week, along with the small Vit D my Neph prescribed daily.

I've never had cramps so bad that I bruised, much less dislocated anything.  It has to be hell.

How is the circulation in the legs?

I have had stents placed in both sides of the arterial 'Y' to restore flow to both legs.  Prior to that I couldn't walk much more than across the room and my legs would burn and cramp until what little blood flow would flush out the lactic acid produced by the muscles.

First thing you need labs done to make sure all minerals and Vit's are within acceptable ranges.

Talk to the vascular surgeon that did your fistula, ask if he can order the doppler ultrasound to check flow in your legs.

Ask about prescribing tramadol for the chronic pain, it is a synthetic and used correctly doesn't make me feel 'altered'  like all the other opiate directives do.

Also ask if there is a pain specialist nearby, they will seriously listen and help you to find a way, no one should have to live in pain.

[Charlie B53]

Oh, get copies of your labs, from when you started PD to present, so you can see what has changed.

Take these to the pain Dr.  If those labs do not test some things he will order more inclusive bloodwork do.

There is something that is missing, without the right tests it can be very difficult to find it.

Don't give up hope, the right Dr will help you.

[jeannea]

Why do you not have a primary care doctor? Ask everyone you know and find a good one. You need one. Pain specialists are great but it's hard to say if that's what you need or not. It could be related to not getting the correct dialysis or maybe even having some kind of reaction to something used in dialysis. Can you gather blood test results and info on your treatments (speed, time, dialysate, etc.) and see a neph at a teaching hospital? It appears you need more specialized help. I'm sure the pain is awful. Don't give up quite yet.

[PrimeTimer]

........................
And oh, by the way, years back when I had cramps that left bruises on my calves, doc said I needed to increase my potassium AND Vitamin D intake. I began eating more bananas and drinking more milk and she was right...no more cramping or bruising.

I used to take quinine capsules for chronic leg cramps but they have quit prescribing them, too many problems even tho I never had a problem with them.

I have massive chronic pain from being a guy, too many permanent injuries.  It's a wonder I have survived much that I have put this poor body through.

I just saw the pain specialist this week and finally have been put on the fentenyal patch.  It's the smallest and barely makes any difference, but he said he will not increase it for at least 90 days.

I am still taking tramadol, 400 MG daily, it does make a difference, just not enough.

Dr pointed out that my Vitimen D was barely detectable on my last labs, that D is essential for controlling pain.  I don't know how, or why, but he prescribed a massive Vit D supplement to be taken only once a week, along with the small Vit D my Neph prescribed daily.

I've never had cramps so bad that I bruised, much less dislocated anything.  It has to be hell.

How is the circulation in the legs?

I have had stents placed in both sides of the arterial 'Y' to restore flow to both legs.  Prior to that I couldn't walk much more than across the room and my legs would burn and cramp until what little blood flow would flush out the lactic acid produced by the muscles.

First thing you need labs done to make sure all minerals and Vit's are within acceptable ranges.

Talk to the vascular surgeon that did your fistula, ask if he can order the doppler ultrasound to check flow in your legs.

Ask about prescribing tramadol for the chronic pain, it is a synthetic and used correctly doesn't make me feel 'altered'  like all the other opiate directives do.

Also ask if there is a pain specialist nearby, they will seriously listen and help you to find a way, no one should have to live in pain.

Sorry if I confused anyone but it's my husband (not me) who is on home hemodialysis. But I've lived with chronic pain (from Polymyositis and Fibromyalgia) for many years. My circulation seems to be fine. You gave some good advice tho about Vitamin D and pain management.

[Speedy1wrc]

A few things that work for me:

Gabapentin(Neurontin). I take 100mg daily. It might take up to 2 weeks to really work, but it helps take the edge of the cramps. At only 100mg it may make you sleepy at first, but it should get better. There are some side effects. It dulls nerve pain and nerve sensitivity all over.

Vitamin D. Make sure it's where it needs to be.

Vitamin E. I take 400iu twice daily. The other benefits are good.

Folic acid. 1mg daily. Good for any dialysis patient.

Tramadol 50mg PRN when the cramps get bad.

Heat. I keep a heating pad close by. Try and use heat before the cramps and/pain gets bad. It can keep it at bay.

[Bambino_Bear]