[Breaker814]

Any Sleep stories?

I am not for one to have broken sleep. The last week I have been woken up in the middle of the night with RSD PAIN. Tonight, I can't sleep cause I am in SO MUCH PAIN. I was fine most of the day. PT was good, I had more movement. I been taking my pills and I was fine, I don't know what happened that I just can't Sleep.

Any suggestions??

[birchlake]

Sleep problems are very common with those of us suffering from CRPS.

And when you don't sleep well, it makes it that much harder to handle chronic pain.

After consulting with two doctors, I began using Trazodone (generic for Desyrel) to help me sleep. It certainly doesn't solve all of my sleep problems as sometimes the pain will override the effects, but there is no question that it helps significantly. It's an inexpensive generic that is commonly prescribed for both sleep and mood.

You may want to talk to your doctor about a meds review that might help your sleep.

[ballerina]

Originally Posted by Breaker814

Any Sleep stories?

I am not for one to have broken sleep. The last week I have been woken up in the middle of the night with RSD PAIN. Tonight, I can't sleep cause I am in SO MUCH PAIN. I was fine most of the day. PT was good, I had more movement. I been taking my pills and I was fine, I don't know what happened that I just can't Sleep.

Any suggestions??

Sleep disturbance is one of the hallmarks of progressing CRPS.

Trazadone is an old standard workhorse drug to help with both pain and sleep. It is well tolerated by most patients and has low side effects. Dosage usually starts at 50 mg and can go up to 150 mg at bedtime.

I am extremely sensitive to most drugs but could tolerate Trazadone. Sleep medications will not slow the progression of CRPS, just help to manage the symptoms. I took Trazadone for two years and stayed at the 50 mg. level. It is not a long term solution, however. Typically one would build up a tolerance to that level and need to increase the dosage for the same relief. I was an unusual case in that I took Trazadone for two years and stayed at the 50mg. level Trazadone also helped with other symptoms of disease progression such as night sweats, and rapid heart rate.

Trazadone did not help my other progressing symptoms such as dystonia and color change.

I stopped taking Trazadone (and most other meds) very soon after I began tDCS treatments when sleep improved, dystonia vanished and color changes greatly improved.

If you get a chance take a look at Hooshmand's website, particularly his puzzles section. That is where I first learned of Trazadone since pain management docs seem to recommend newer drugs with side more effects. The website will also provide you with some tips on treatments to avoid due to risk of spread like Spinal Cord Stimulators.

Hope this helps.

[catra121]

As the others said...sleep problems are pretty normal. All last year (after my RSD spread and got worse) I was not able to sleep more than 20 minutes together and would be up sometimes for hours in between. My new doctor started me on Amitriptyline...just one at bedtime and since I started that I have been able to regularly get 3-4 ours of sleep all together. It still doesn't sound like a lot but it is SO much better than what I was getting before. I hope tDCS is able to help my sleep like it has for ballerina because the Amitriptyline is the only pill I take these days (off everything else after I had bad interactions between meds) and it would be nice to not have to take it. I seriously worry about the long term side effects of what all these daily meds could be doing to my body...and me only 28 now (25 when the RSD started). A year after I first got RSD I had to go to the ER for a kidney stone and they found a mass on my liver. It wasn't caused by the meds (at least we don't think it was) and it wasn't anything to worry about but it started me thinking and worrying about stuff like that. I will take the meds if they could give me the quality of life and really made an impact...but most barely touch the pain and I don't want to go to anything stronger. But the sleep thing was killing me...so the Amitriptyline is worth it (for now). But if I can get to a point where I can stop it then nothing would make me happier...seriously. I still wish I could get more sleep...sucks waking up between 2am-4am (depending on when I fall asleep) because there's just not a whole lot to do that time of night...oh well. There are worse tragedies and I am just grateful for the 3-4 hours of consecutive sleep I get now.

[cindi1965]

Bless your heart...I haven't had a good night's sleep in almost 4 years, and when I do sleep it is in fitful intervals. I don't want to take anymore pills since I take so many now. I have, in the past, been on a sleeping pill, but all it did was make me feel drunk. I really have no answers for those who are having sleep problems. I just pray every night that I get at least 5 hours straight...sometimes I do, which is great for me, but I would LOVE to have a normal 8 hours straight of sleep. I try to wear myself out, but all that does is make me have more pain and spasms at night...

[Breaker814]

Sorry everyone that you guys don't get much sleep.

Do you guys work with this condition? Im on workers comp right now so I've been home but I was wondering how do you guys deal with going to work with this going on???

[catra121]

I was working for a year and a half with RSD before it spread and got worse and I had to be taken off. I'm ready to go back now...but work won't let me...so I am not quite sure how this will affect me once I am able to go back. However...it was fairly normal for me to be able to work on 3-4 hours of sleep before and I assume I will be able to do the same. I have been trying to "simulate" activities like if I was going to work. Things like getting up at a certain time, going through my morning pain management routine, getting to a certain place at a time I set for myself (like the grocery store or lately the forest preserve) and then walking for a couple of hours, then coming home and trying to do some activites around the house to simulate other work activities...things like cleaning, doing the dishes, and certain physical therapy exercises. As soon as I find a new job and go back to work I feel pretty confident that I will be able to function okay. It would be nice to get more sleep and feel more rested of course...but I feel the bigger struggle for me will be pushing through the pain on the bad days. Of course...my case might be a little different because with working in retail I always worked crazy hours...it wasn't uncommon for me to work 50-60 hours a week. So I guess I was always able to function on little sleep when the occassion called for it. Makes me wish that I had taken advantage of being able to get a full night's sleep when I could.

Anyway...I think (and this will sounds pretty bad) that once something like this becomes the "norm" you learn to deal with it and function despite it...if you can. I don't mean to minimize the effects RSD has on people...we cannot all go back to work and everyone has to learn to cope with things in their own way. Every day I really have to push myself to get up and go through all the motions...it would be so easy to just say the pain is too bad and give up...but I keep fighting. My boyfriend says it's a good things I am so stubborn. So I don't mean to say that it's easy to deal with...but it helps me a lot to approach it like I do. When I find it's a particularly bad day and I feel myself wanting to give in, I just keep reminding myself of those horrible days when I couldn't walk or stand or sleep or wear normal clothes or a do a million other things and I know I do NOT want to go back to that...but that's what will happen if I let the RSD win. Some days I have to take it easier than others...but there are compromises I will not let myself make.

[CRPSjames]

I really did not think I would ever get good sleep after I developed CRPS. That fear was reinforced with the implantation of the Boston Scientific Spinal Cord Stimulator. Although the stimulator temporarily helped the pain it didn't touch the sleep problems. When the stim caused a spread and then stopped working altogether the sleep issues became even worse.

I have been sleeping like a baby since very soon after beginning tDCS treatments. I am no longer taking any sleep meds and I have tried many over the years.

The relief I have gotten from tDCS for sleep alone is life changing for me (and that does not even address all of the other symptom relief I have had.) All of the symptoms of CRPS progression are either improving or gone.

[Nanc]

Originally Posted by Breaker814

Sorry everyone that you guys don't get much sleep.

Do you guys work with this condition? Im on workers comp right now so I've been home but I was wondering how do you guys deal with going to work with this going on???

Hi Breaker!

I have RSD in the right side of my face, both hands, left arm and left leg. I developed it 20 yrs ago in my face and the other areas came about in 2009 - spread from a new injury. RSD has certainly affected my sleep! Can't tolerate many meds, so going that route didn't help! I was not sleeping well at all, but am doing somewhat better now because my pain isn't quite as bad as it was.

In 2011, I had two spinal cord stimulators implanted (thoracic & cervical). The cervical scs helped me regain the use of my hands/arm. With that, I am able to continue working. It was questionable there for a while, but the scs helped me greatly. I have days that aren't so good and wonder how I am going to keep going, but I just keep plugging along! I cannot do the activities that I used to (scrapbooking, drawing) which bums me out, but I am still working and that is a good thing! Being able to work is very important to me, so it takes all of my being to get through the workday and that doesn't leave strength for anything else really. Luckily I have a great husband who picks up the slack at home

With RSD, your "normal" definitely changes, you adapt to the best of your abilities...everyone is different in how they adapt.

Nanc

[LIT LOVE]

I've had RSD for 11 years. The first 4 or 5 I was incredibly sleep deprived, and this certainly made everything worse.

I've worked out to take more meds in the evening, so I'm at a very low pain level for a few hours. Warm baths with Epsom Salts help. Heating pads. Even CD's that help your brain to relax and prepare for sleep are wonderful IMO. If you're hypersensitive to noise, you might find yourself pushing your bedtime back because you're more comfortable at night. I've changed out my curtains to reduce neighborhood noise, and it's helped quite a bit.

Having sheets that are soft can help if you have allodynia. At a pillow (or pillows) to cushion a bad limb/s is something to try.

Are you having chills and nightsweats? I used to wake up all the time from them and have learned to have lots of layers on my bed so I can add or subtract through the night...

Meds can also increase sleep apnea as well. If there's a chance this is an issue, a sleep study is a good idea.

I'm not a big fan of sleep meds, but I did have a prescription for herbal med that was quite effective with no side effects a few years back. So, ask your doc about options.

Your body Can't heal without a normal sleep pattern!