Connect
Restless Legs - Any suggestions as seen many doctors and medications
Hi, I’m new to Mayo Connect but here goes…I have had RLS (Restless Leg) for about 40 years and it started with just occasional problems to now it’s daily at 66 yrs old. I had an unacceptable reaction to a few different meds like Gabapentin and also other meds used to also treat Parkinson’s and the last one they wanted to try had so many BAD side effects that I said no as I have reactions to many types of prescription medications including over the counter Antihistamines, Aleve etc. I do take extra B-complex, Vitamin D, Magnesium, Potassium, tried Iron etc. I often get leg cramps or ankle and foot cramps and remember my mother having them all the time. It doesn’t seem to make a difference if I exercise or not and mine will start late afternoon or evening. I toss and turn at night and I’ve actually made a hole in my sheets before because of moving my legs/feet so much. Occasionally my arms will also bother me. Heat, support stockings, warm shower or bath can help sometimes, but have noticed what works today will not work tomorrow so it’s what do I want to try tonight as again its rare if I skip a day. Just adding to my leg issues … 8 years ago I had an extreme 3 disc fusion in my lower back that was successful, but I woke up in the hospital with both legs and feet numb, which is common, but mine did not go away. About a year after surgery a neurologist said I had some nerve damage in my legs which might or might not go away, plus ankles very tender. Numbness is now mainly in lower calf (so much better) and feet plus ankle tenderness. Told I had neuropathy probably from the back surgery. I can live with sore/numb but the RLS is bothering and need to find relief. I recently moved to another state and my new doctor (after he touched my ankle and I nearly jumped off the table on him) had me go to a neurologist. With his testing he said I did not have neuropathy and he ordered spine CT which was fine, blood work including for RA etc. and all fine. Anyone, have suggestions? Again, I can live with the numbness, but the restless legs are what bother me. Not only is it uncomfortable/ache for me, but I start bouncing my legs, feet, Stand up/down, walk around and back to tapping my feet etc. so I annoy everyone.
Like
Helpful
HugInterested in more discussions like this? Go to the Sleep Health Support Group.
Connect
@SusanEllen66 The only thing that eases the misery of RLS
for me is pramipexole 0.50 or 0.75 mg (prescription).
-
Like -
Helpful -
Hug
1 Reaction@rjjb yes, that is what I have been taking.
@SusanEllen66 Thank you Susan. My biggest problem with RLS had been a lack
of sleep. Pramipexole give me a reasonable amount of sleep.
-
Like -
Helpful -
Hug
1 Reaction@missjb @vikkitennis @darkflowa23
I Enjoyed Reading All of this especially because Suboxone is one of the prescriptions contributing to my RLS, so it definitely doesn't help me in that aspect. I also take sertraline which also is known to cause RLS but only in 5% of patients. After reading I had to see if Suboxone was really used for treating RLS and what if found was it's paradoxically used to treat severe RLS. Also note suboxone is abused by addicts still and can cause a high & cause dependency it's just less likely then other opioids & due to its ceiling effect it won't go beyond a certain point. I know of a few people that both snort the pill version of Suboxone & those that have the films dissolve into water and inject it intravenously....they say the Naloxone will cause instant withdrawal but unfortunately buprenorphine is the only opiod that its not as effective on you need to take a much larger amount of Naloxone to get Buprenorphine knocked off those receptors, thats why Buprenorphine is good for addicts because the other opiods cant attach to the receptors while bup is in ur system. For Opiate Naive People or those sensitive to opiates even a small amount of Suboxone or Buprenorphine can cause an Overdose even potentially killing them. Buprenorphine is stronger then Morphine but like said safer cause it hits a ceiling and won't go any higher, this is where addicts who have tolerance to opiods and quickly lose any "high" or dont feel it at all from buprenorphine & most make the mistake of taking more suboxobe to try to increase the high, well why more bup isn't going to do anything cause the ceiling, they are also increasing the amount of Naloxone which then knocks Buprenorphine off the receptors causing instant withdrawl. So just their nature of seeking a bigger "high" triggers why they put naloxone in Suboxone...creating the anti-abuse side of things but I heard of those that purchase suboxone illegally & only take it occasionally to reduce chances of becoming tolerant while injecting only a small amount so they dont get too much naloxone & they are content with the milder high and pain relieving effects of buprenorphine.
I became physically dependent on opiates after a Broken Shoulder, I've never inject Suboxone or Any other Drugs, but the ER missed that my shoulder was also Dislocated until my follow up with a Surgeon almost 4 weeks after they injury, originally surgery wasn't suggested but after finding out my arm was dislocated (explained the pain I was in and why I could barely move my arm after almost a month of healing) I had ORIF Shoulder Surgery where I got a metal plate, 9 screws, and a metal cable put in my arm. I needed the pain meds to even attempt to sleep but almost impossible at 1st but once pain became manageable I found myself to have severe withdrawals so I started the Suboxone Program....I found that I found my self kicking the air, tossing turning, sudden urges to move my leg I tried to force them into places they couldn't move but it would just drive me mad, usually always kicking off all my sheets, they gave me trazodone but it made me severely dehydrated & woke up within 1-2 hours and afterwards my RLS would be worse typically causing me to not fall asleep until early morning or just having to force rest my eyes while I constantly moved into different positions throughout the night.
What I did find though for me Gabapentin did help with my RLS that was caused from Suboxone, I don't take trazodone anymore because of the side effects I had....while it doesn't always work I find it Gabapentin gives me more relief then I had so I'm happy with that until I can hopefully taper off the Suboxone as I was told that I very well may become dependent on it as well but the withdrawls are considered much more mild and manageable then other opiates.
It just shows what works for 1 person, Doesn't necessarily works for Everyone.
Very interesting review of your treatments! Wow on your shoulder problem. You finally got it fixed! I appreciate your input! Thanks for the good input!
@kaakenath Hi kaakenath, What an interesting post. Thank you for sharing so much information. I didn't know that much about Suboxone from a "treating addiction" standpoint.
I believe I am the only one on this forum prescribed Suboxone---others take buprenorphine just as buprenorphine. My doctor prescribes buprenorphine as Suboxone bc it is less expensive that way.
I spent years thinking my RLS was a muscular problem. It presents as an aching pain. My primary doctor thought (for a short while) it was due to spinal nerve damage and prescribed pain medicine. As soon as she realized it was RLS, opiates weren't an option, but I learned--for me--that is what works.
So, for me, buprenorphine has given me back the ability to sleep. For this I am eternally grateful. After years of sleep deprivation, being able to sleep is a priority for me.
Gabapentin and pregabalin didn't work for me. Neither did the iron IV.
My doctor said some RLS researcher thinks "painful RLS" is what needs opiates/opioids for effective treatment. Evidently, only a small percentage of people with RLS experience it as painful. This is just a theory, but it is interesting.
I do wonder if all RLS is actually the same disease.
You are right that other drugs can exacerbate RLS symptoms. I just got finished taking antibiotics and I swear a spell of bad RLS symptoms was caused by this. It's nothing expected, but my doctor didn't discount it.
What is known (and more universal) is that antihistamines, antidepressants, antianxiety drugs can make RLS worse. It seems like a mine-field of possible drug interactions and maybe specific to the individual.
I think anyone could develop addiction problems, depending on the circumstances. Chronic pain--particularly severe pain--is another whole dimension and force. It sounds like you have been through a lot.
That fact that gabapentin works for you is wonderful! After all you have been through, you certainly don't need RLS interfering with your sleep.
Thank you for sharing. Thank you for telling us more about Suboxone.