Pain in Legs/Feet While Sleeping – Anyone Else?
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April 19, 2018 at 12:31 pm
(TL/DR: Skip to last paragraph for question without long-winded context.)
Hi Everyone! New here, though I’ve been lurking for a couple months now. These forums were very helpful to me while I was in the hospital. I was diagnosed with CIDP at the beginning of the year, after presenting symptoms while pregnant with my first child. (Of course everyone told me my symptoms were just a third trimester side effect, until they got way worse after the birth. Baby is fine and doing great btw.) IVIG did not work for me, and after twelve close treatments of it (including six with steroids, which was NOT. FUN.) I was offered plasmapheresis, which worked like a charm. During the two months after the birth, I had gone from shakily walking to complete bed confinement, but within two days of starting the PP I could sit up, and within seven I was shuffling around with great assistance. After two weeks of rehab I was able to go home with my walker. That was in mid-March.
My symptoms were mainly parasthesia in my arms and legs, a steadily-rising sensation that eventually rose through my chest and shoulders and head until I was on full body pins-and-needles all the time. I also became very weak in my legs (though thankfully not my arms) and lost proprioception as well, starting in my feet and eventually reaching into my abdomen. (Could no longer tell where said body parts were, nor what they were doing. Lost both appetite and ability to feel the need to ‘go’ when it hit my stomach area. Again, NOT FUN.) I also got intense shooting pains through my joints and muscles and it felt like I could not relax my legs at all, only tense them, which lead to stress and pain from being tensed for so long. Imagine flexing really hard, and the holding that flex for -weeks-. Still, I was very lucky that my lungs and breathing were never affected.
In total it was about three months from onset of symptoms to the beginning of my recovery. Today I only have mild tingling in my hands and the bottoms of my feet, I am getting stronger every day and really only use my walker for safety and speed because I *can* walk slowly without it. (Not supposed to without someone spotting me yet, but I’m getting there.) I can even go up and down stairs! The pace of improvement has slowed down, but I’m still getting better so that’s okay. My continuing treatment is a once-weekly dose of prednisone at 250 mg and outpatient physical and occupational therapy.
PROBLEM/QUESTION: My biggest obstacle to getting well again is sleep. I have no problem falling asleep, but I always wake up within 2-4 hours with horrible pain in my lower legs and feet. Sometimes I literally wake up sobbing in agony. This pain isn’t present during the day, it only comes about when I am lying down and sleeping. The only cure is to get out of bed and go sit in a chair somewhere (usually at my computer, because bored) and wait for it to go away, which can take twenty minutes to two hours depending on the severity. Then I go back to bed for another two hours, wake up in pain again, rinse and repeat through the night. Sometimes it takes so long to wear off that I only get two hours of sleep; most nights I average 4-6 but the sleep quality is poor and interrupted. I am constantly exhausted and miserable and it is affecting my work. (I work full time from home, thank goodness.) I’m trying anything and everything I can think of to deal with this pain. Tylenol and Motrin don’t even touch it. Different sleeping positions don’t help. I have an appointment with my primary doctor tomorrow to discuss it, but she doesn’t specialize in CIDP and getting on my neurologist’s schedule could take weeks.
Has anyone else had this kind of pain and sleep interruption? If so, how did you deal with it? Did it eventually go away? All my other CIDP symptoms seem to be receding steadily, but this one isn’t budging.
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April 19, 2018 at 3:04 pm
First, it’s great to read that you are improving! But recovery can take up to three years and may never be complete. I had severe pain in my legs when I was in hospital, for which I took strong meds. When I started recovery I soon got off the pain meds, although I still had some pain symptoms which were not as severe as during the active phase. For a time at home I would still get occasional shooting pains in my lower legs, but over time they became less frequent. Now, several years out, I no longer have lower leg pain but I do have foot pain, which seems to be permanent. The severity varies with activity, however. At night it is more discomfort rather than pain.
Keep in mind that less than a year is a short time for recovery from this disease. You should continue to improve over time, although the rate of change will slow. There is a good chance that your pain will lessen to a tolerable level over time. In my case, although I have some residual pain, I take nothing for it. It is better to live with mild pain than to take pain meds, in my opinion.
Best wishes for further improvement!
Gary
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April 20, 2018 at 10:10 am
Hi Gary!
I appreciate the hope for relief in the long term, but in the short term I’m having a really rough time since I simply. can. not. sleep. I feel like I’m going crazy half the time and dead on my feet the other half. It is having an effect on my work, which is the biggest issue – I’m the main breadwinner for my family, I’m all out of sick days and short term disability for the year, I need to work to keep my health insurance and I’m not likely to find another job as cushy as this one if I lose it. What pain meds did you find effective for your leg pains? I am already on a hefty dose of gabapentin.
Thanks!
– Mariel -
April 21, 2018 at 6:52 pm
In hospital I was on oxycodone for a time. I got off it as soon as I could because of the nasty side effects. I’ve never taken pain meds after that. As for loss of sleep, I’ve never worried much about that. In hospital I tried taking a sleeping pill once, but it didn’t seem to do anything. Then I tried a stronger dose with the same result. Then I quit. I’m not into sleep meds either.
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April 21, 2018 at 7:16 pm
Glad, in general you are doing better. I’m shooting from the hip here. Maybe its a reaction to your high dose prednisone.
Try putting a pillow under you knees. I found during the first months of CIDP, if I crossed my legs or feet I would get horrible pains. Maybe your circulation is getting cut off?
Get tested and see if you are low on potassium.
Try drinking Enfamil or Enfalyte. You might be dehydrated.For some reason, being on IVIg, I’m low on potassium and seem dehydrated, resulting in muscle cramps. I have found Enfamil helps to rehydrate me.
I understand as far as the job goes. I’m getting IVIg treatments twice a month. My insurance has a $3000 out of pocket limit. It literally picks up 100% of the rest of my bills. The hospital charges $36,000 a month for my treatments. I’d be in the poor house without my job.
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April 22, 2018 at 8:29 am
So, I may have actually found a solution, and figured I’d post it here in case it helps anybody else – CBD oil. Yep, pot. Sort of. The stuff I got has no THC in it, which is the phsychoactive component in marijuana that gets you high, and it’s legal to buy/use in all fifty states. It isn’t FDA approved though, so doctors will neither prescribe nor recommend it. I only found it because I was looking into legal medical marijuana options since a friend of mine who has dealt with chronic leg pain for years sometimes self-medicates with marijuana (the not-legal kind) and found that it relieves his pain greatly.
Anyway, after some research into different brands and methods of application, I got a little bottle of ‘Green Roads CBD Oil 350 mg’.
Took three drops under my tongue right before bed. It made me drowsy but had no other effect on my brain from what I can tell, but my legs didn’t hurt AT ALL last night. They started to hurt again around seven thirty this morning, guessing that’s when the dose wore off, but even then not as strongly as they often do and I was already awake because baby. (Am not breastfeeding, btw, which is good because this oil isn’t for pregnant or BF-ing ladies obviously.)
So, there’s that. It’s only been one night, so I’ll keep using it and see if it continues to help.
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April 26, 2018 at 10:26 am
Final update: After several days use, I can confidently say that the CBD oil pretty much eliminated all of my neurological pain, which was the extreme pain I was feeling in my legs. However, it does not help with muscle/joint pain, so if I push myself too far during the day I will still have a lot of pain at night. For that I alternate Tylenol and Motrin, which take the edge off. I’m now averaging 6-8 hours of sleep a night instead of 4-6, so that’s a huge improvement!
Hope this helps someone else too. :3
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April 29, 2018 at 10:10 am
I have to agree with Mariel141. I got hit with GBS a little over a year ago and I still get the burning feet, legs, hands and face 24/7. I can ignore it during the day but the nights were rough. I couldn’t sleep for more than 2 hours at a time and usually couldn’t get back to sleep.
I can’t take NSAIDS or opioids so pain control is a problem.
I tried CBD hemp oil for another issue as an anti-inflammatory about 6 months ago. It didn’t work for that but I found it puts me right to sleep at the end of the day and more importantly I stay asleep all night. I have had insomnia problems for 20+ years so this was a big relief.
The downside for me, I can only take it at night. Even at low dosages I was falling asleep during the day if I took it in the morning. It also makes getting up early in the morning very difficult. I now have a strong tendency to fall back asleep after the alarm clock goes off. It also takes a couple of hours for the cobwebs to clear in the morning. I also can’t take caffeine.
It seems to me that the effects last 10-12 hours regardless of the dose.
I found a product called Hemp Medix to be the best price for the concentration. A $60 bottle lasts me 3 months.good luck
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May 1, 2018 at 9:37 am
Hi,
Yes, I had the same exact symptoms. Only thing that worked for me was medical marijuana. Instantly took all pain away. I’m blown away by this miracle herb. I only medicate prior to sleepn taking 2 hits of oil (vape). If you can get a medical marijuana card i highly recommend it. The indica strain i had helped with all pain muscle, nerve, bone, and even insomnia. Has thc but the high helps with relaxation. Nothing too strong. Hope this helps. Continue to heal.
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May 16, 2018 at 6:12 am
I am a volleyball player in my school. And this is one of the reasons why I am still studying because I’m a varsity player. And every time that we finished our training my body keep suffering from pain. My lower back, my legs, even my arms are in pain. And one of my friends recommends me to use CBD oil for this. And I am not sure about this that’s why I came across this article that it can help me to my pain. And I am using it now for 3 days and i feel relief. So thanks to MJ Haha.
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