Discussions By Condition: I cannot get a diagnosis.

Severe joint spasms when going to sleep??

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: desperate4help
  • October 27, 2008
  • 03:02 PM

Does ANYONE have spasms in their joints ONLY when they try to go to sleep? I can't be the only one in the world with this. I just pray that someone who can help or relate will read this.

Just like most on this site, I'm reaching out in hopes that someone out there can relate to my situation or help with ideas. I am an almost 40 yr/f and have been suffering with joint spasms for almost 10 years. The only ONE consistant symptom is that they ONLY come on when I try to relax to go to sleep. This happens nightly and can keep me up hours stretching or taking super hot baths. Originally, the spasms started in my hip joints. Over the past years, they have "moved" to include my left shoulder, ELBOW, and left hip joint...rarely affecting the right side anymore. Stetching the joints helps, but severe spasms require severe stretching...which has led to pulled back muscles. Exercising can help, but does not assure relief. Spasms at their worst feel like bolts of electricity shooting through the joint causing spasm and sometimes pain. Past: one pretty severe car accident when I was 17 resulting in whiplash, migraines, permanent upper shoulder damage and lower back pain. 1 1/2 year in PT then released with little results. Docs say this is irrelevant.
I have been looked at for the beginning stages of MS (said no but no MRI was run), Lupus, vitamin and mineral deficiencies, diabetes. Fibromyalgia has been considered but the spasms are not consistant and I do not have them everywhere. Only results have been elevated white blood cell count for unknown reason and mild arthritis in the SI joints. Docs look at me like I'm crazy because I pass all of their tests (so far).
I have been given a slew of muscle and skeletal relaxers, all to no avail. Unfortunately, the only family of meds that give relief are in the Valium/ Diaziapam family. They stop the spasms. Since this is controlled, I usually have nothing to help me deal with this termoil.

Any help or someone to relate with would be appreciated beyond belief!

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4 Replies:

  • It sounds like you could have Restless leg Syndrome which can be severe to mild and affecting other parts of the body sometimes. Temazepam and other "pams" are a treatment for this, however can be long term hard to get off of. There are other medications like Mirapex, and Requip that treat RLS. It is just interesting that the "pams" help. You could see a sleep specialist they are the experts in this.
    ariel3 4 Replies
    • October 28, 2008
    • 03:50 AM
    • 0
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  • Wow, I've been discribing that exactly to people all my life, I am almost 30/m and have been getting those exact joint spasms as long as I can't remember... Problem is they have been increasing in frequencie (on Specifically the right side, usually in the elbo hip or knee) to the point where I'm desperate find a cure just so I can get some sleep. Feels almost like a sustained reflex reaction, like when the doctor taps your knee to "test your reflexs" onl constanly. Drives me absolutely mental.
    Anonymous 42789 Replies Flag this Response
  • I have been getting very similar spasms, but mine started with ILS and now it has started to change into spasms in my arms and legs (strange but happens more on my left side), it's starting to drive me mad, I have to wake myself up from being drowsy, I have tried the Pams and they seem to work, I have also tried GABAPENTIN which worked great. Alcohol or painkillers seem to make it worse, however, a strong does of Nurofen for me has given some help some times. I really don't think I can go into the future putting up with this for long, there must be an answer to this. Also mine seems to be brain related, ie, part of my mind is not going to sleep and they sends a pulse message to my legs or arms or both, really peevs me off.
    Anonymous 42789 Replies Flag this Response
  • I have been getting very similar spasms, but mine started with ILS and now it has started to change into spasms in my arms and legs (strange but happens more on my left side), it's starting to drive me mad, I have to wake myself up from being drowsy, I have tried the Pams and they seem to work, I have also tried GABAPENTIN which worked great. Alcohol or painkillers seem to make it worse, however, a strong does of Nurofen for me has given some help some times. I really don't think I can go into the future putting up with this for long, there must be an answer to this. Also mine seems to be brain related, ie, part of my mind is not going to sleep and they sends a pulse message to my legs or arms or both, really peevs me off.I am a 30 yr/F that has these painful spasms as well. I am up to 1000mg of Gabapentin, Amitriptyline and have tried a few different muscle relaxers. I'm also on very high doses of Morphine for a back injury. I get the body spasms during the day too but, they are worse when I try to sleep. I never have any warning as to when they are coming. It's very frustrating. My doctor tells me that I have nerve damage yet, I have not had a nerve test that I've been requesting. I also have a completely numb right hip. The numb area seems to be spreading. I can not feel touch or hot/cold but it sends a wave of pain if something touches it too hard. The newest symptom is non-pitting swelling in my hands, arms feet & legs. One day I woke to find my left eye & cheek swollen. The swelling has been going on for 3 weeks today. This has made all of my extremities sore. I now have a lot of pain in my hands & they have a "pins & needles" feeling when I use my hands and then get a pain shooting up to my elbows. I also get these 'burning spots' on my body that sort of feel like a sunburn. I have woken up to that feeling when it gets too intense thinking that I'm actually on fire..... If anyone has a story like mine and can shed some light on what's going on, I would LOVE to hear your thoughts.
    Anonymous 42789 Replies Flag this Response
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