Hello. I am a 49 year old woman. I have suffered with Restless leg then home for over eight years. Up until two years ago it was tolerable. If I missed a night or two of sleep I could still function because it didn’t happen every night And I could catch up on my sleep here and there. At this point it is totally debilitating. It is full blown. I go for bouts of 6/7 days with 0 sleep! And then I might get a break for one or two days and then it starts up again for a long stretch. I’ve been on gabapentin, Requip, MiraPax, Horizent, I can’t afford the neupro patch. I’ve tried exercise I’ve tried pure lavender oil lotion I’ve tried so under the Mattress, I’ve tried soaking my feet, I’ve tried calling rags on my feet I’ve tried A heating pad, I’ve tried different sleep medications (Which don’t help all they do is make me extra extra tired while I am awake dealing with the Restless leg’s and down. Another words the RLS trumps the sleep medication.) I have tried to tight socks, I’ve tried bandage wraps and I even had an iron infusion. None of them worked. I just recently received my medical marijuana card and I am in the process of trying different things with that, but nothing has worked so far. That’s expensive too. And I lean more towards the CBD rather than the THC because I can’t tolerate the psychoactive effects. Three weeks ago I saw a pain management doctor and I asked him for Percocet because I took some of my sons Percocet that had expired a few months back, It was left from his hernia surgery two years ago. He had four left. I took one each night and it worked like a charm. So I don’t understand why it’s not working now. It is the same strength it’s only 5/325. The pain management doctor is having me get an MRI done of my neck and back just to see if anything is going on there. So I continue to seek help. I do not want to be on my comment I don’t want to be strung out on pain medicine. But to be honest I need to ask for something stronger I guess and I don’t know if he’s going to give it to me and I’m scared to death because I need something to take this away!! At this point I’d rather I guess being medicated I am stuck in my house the rest of my life just so I can be rid of this pain. I also have neuropathy’s, so that doesn’t help. Tomorrow I am starting Cymbalta for that in place of the lexapro That I’ve been taking for anxiety. Cymbalta supposed to help both. But it’s not for the RLSl!!! I’m going to have to start going to the hospital because of sleep deprivation. Who knows what to expect with that I doubt there’s anything they can do. But I think about suicide a lot. I haven’t thought about it to the point of how I would do it or anything like that it’s just the start of I’d rather be dead than deal with this f in RLS!!! I also just recently applied for disability because I can’t work. My house is a mess because I can’t get anything done and my husband is working like a madman just to make ends meet. I also feel it in my arms sometimes but that’s not nearly as bad as my legs at this point. I sometimes feel like I have it in other parts of the body including my face to wear just has this weird urge to move but it never gets relief because it doesn’t move. And my legs hurt really bad just from all of the continuous tense spasms!! I’m becoming an introvert I don’t want to talk to my friends on the phone I don’t know what to do. Are there any places that you can go to that really study that that could help? I mean I see a neurologist but he sent me to the pain management doctor. Someone please help me!!!
I can’t go on: Hello. I am a 49 year... - Restless Legs Syn...
I can’t go on
Just letting you know, you are not alone with those feelings, I’m exactly the same at the mo. Try and keep positive as best you can. I’m here to talk to anytime xx
Hello you did well with all your reply’s at least it gets us all going , a bad night for me tonight no sleep yet and it’s 4,30 so I think I will get dressed and forget it I have done the ironing, dare I ask how you are ? Xx
Ty.
Ty very much. So sorry your suffering as well. prayers for you
Hi, I am very sorry to read your posting.
I am wondering what happened/changed about eight years ago to trigger your RLS symptoms.
I note that you are starting Cymbalta. Unfortunately this is of the drugs that can make RLS much worse. In the following link there is a list of some of the medications to avoid: rls-uk.org/treatment/
It may be helpful to us if you can list the medications you are on at the moment including those that are not actually prescribed by a doctor but you may buy over the counter.
I am so sorry that you are in a bad place right now.
Good for you for continuing to find things that help! That is a good sign. I once wrote about my situation and gave it to my therapist to read. After she finished reading it, she said that she wouldn’t be able to deal with what I’m dealing with. My response was, «well, how am I doing it, then?». She said that there must be something there (that something being hope). It sounds like you still have hope, so please hold onto that.
Have you tried Lidocaine Pain Relieving Liquid? It is designed to desensitive the nerve endings. It works well for me whenever use it (and I get tremendous pain at times,) so maybe it can help you too?
I suggest you get out all of these feelings to a neutral party like a therapist. I understand about wanting to get away from talking to people you know. Since they just can’t imagine the extent of the Hell we go through with RLS, talking to them just becomes maddening. I’ve had someone tell me that my symptoms can’t be that bad, I’ve had someone else tell me «but everyone has that at times» when discussing my leg movements, etc.
Please hang in there!
Empathetic hugs,
Jessica
Hey Jess! I was reading your reply and have a question for you. Is the lidocaine pain relieving liquid oral or topical? What brand and how much do you use? Thanks!! Lana
Hello! It’s a topical by Salonpas
amazon.com/Salonpas-lidocai...
I roll it all over my legs (it’s a roll-on stick).
I really hope it helps!
You can also try Relaxing Leg Cream by Magnilife, which gives my legs a soothing feel when rubbed in:
I am so sorry you’re having such a hard time. This is a horrible disease and unless you have experienced it, nobody understands how terrible it can be.
As Kaarina states above Cymbalta and most anti depressants and anti anxiety meds make RLS much worse. Trazodone and Wellbutrin are safe alternatives.
Most anti histamines also worsen RLS.
Your symptoms sound like severe Augmentation which happens after years on dopamine agonists like Requip and mirapex. You say you’ve tried these but are you taking any at their moment?
As Kaarina says above, we need to know ALL the meds and supplements you are currently taking and then we guide you in the right direction.
Are you in the USA? If you’re near Redwood California you could try to see Dr Buchfuhrer. He is an RLS expert and believes RLS can be controlled with the right meds.
Please stay in touch on here and we should be able to point yooin the right direction.
I'm sorry to hear of your suffering. I don't have a lot to contribute in the area of med knowledge, however I do have a couple questions. Have you seen a chiropractor? I have in the past and he brought the topic of the piriformis and the sciatic nerve. He felt that the route the sciatic nerve takes may have a contributing affect with regards to RLS. Do you get RLS when lying down or can it happen anytime?
Hi and thank you. No I haven’t seen a chiropractor. I didn’t think it was in their area. I get it mostly lying down but it can happen just sitting.
Thoughts of strength to you. I have been there. I read all the posts. Support is here even if just the understanding of what it feels like to have RLS. Torment of no sleep and the dread of no relief. Does sound like augmentation. Try to keep your mind busy someplace else. Hope the pain doc can find some relief.
Ty so much!!! Yes it does help to have others care and understand and take the time to reach out!
Have you tried codeine? 24mg taken just before bed works well for about six weeks. Then I take a break for two weeks. Gabapentin also helps me, but it is important to take 100mg 4 hours before bedtime and another pill 30 minutes before bed. It does not start working right away. The last trick is to run in place for 11-12 minutes just before bed. On the rare occasions when this does not work perfectly, I run in place for 11-12 minutes and that always relieves the problem for at least 3-4 hours.
Hello. Codeine is one of the things I’ve always said I’m probably allergic to because it makes me feel like I can’t. I’ve tried gabapentin but it didn’t work for me, although I don’t know what milligram I was one and I took it right before bed. May I ask how and what kind of doctor figured out that you should take 100 mg four hours before bed and another pill 30 minutes before bed? When I took a gabapentin I didn’t do anything for my Restless leg and then I was just so drugged out from it. I haven’t tried the running in place but I walk back-and-forth and back-and-forth and back-and-forth. But the running is something I will try I will try anything. Thank you so much it’s just that right now I can’t even fathom doing that because I’m so tired from not sleeping I have absolutely no energy to do that. I need a break on some sleep before I can even try that
My doctor was not smart enough to tell me when to take gabapentin. I had to figure that out myself. 4 hours before works fine when I also take codeine. When I used it alone, I was taking it 6 hours before bed and another 100mg just before getting into bed.
I never heard of anyone being allergic to codeine. It has made a huge difference in my life, so if I were you I would give it a try. 24mg is what I used just before bed each night, but you may find that 16mg is plenty at first. Also note that the first night you use it there might be little efficacy. Apparently it needs to build up in your body somewhat before it works well.
Of course, the efficacy declines eventually. When I used codeine alone I had to stop for 2 weeks after using the drug for 6 weeks. Then efficacy returned. I am not yet sure how long efficacy will last now that I have combined it with gabapentin. It has been about 10 weeks so far with almost perfect results.
When running in place, try to avoid running on the end of your foot. Try to bang your heels into the ground when you run in order to maximize the impact on your legs. Again, no doctor told me that.
RLS is a horrible syndrome. Please add a psychotherapist to the mix - it sounds like you desperately need someone to talk to to help you manage your anxiety - which is understandable. Anxiety can aggravate the symptoms indirectly, because when we’re tense and anxious, everything seems worse. Many of us have had horrible times like this. I take CBD/THC (legal where I live) and did quite a bit of research on it first. You definitely need the THC - CBD alone doesn’t help most people with RLS. I needed more at first (enough that I wouldn’t drive my car), then was able to back off. Right now I take 1 Mirapex/day in the evening, most days. Getting off this last pill is proving more difficult than when I dropped the other 3! I’d like to encourage you to stay away from Percocet - it’s highly addictive and can ruin people’s lives. It’s a drug that convinces the brain it needs more of the drug - dangerous! Has your neurologist done a nerve conduction test on your legs? I’m glad you’re following through on the MRI because there could be something else contributing to your symptoms. Stress, heat/cold extremes, humidity, and being dehydrated seem to make the symptoms worse for lots of people. Helping RLS sumptoms seems to be a matter of putting together small bits until you get relief - drink at least 70-80 oz’s of water (and let your docs know you drink that much); keep temps moderate if possible; eat a healthy diet; get moderate exercise (yoga or Pilates often help because they’re soothing, not activating); and go to a vein specialist to be checked for venous insufficiency, which has symptoms very similar to RLS. I’d add, take what you need to to get some sleep - CBD/THC was miraculous for me, and when I started sleeping after decades of sleep deprivation, my symptoms lessened enough that I felt SO much better. I’m NOT a doctor so anything you do, make sure your doctor knows and approves. You’ll have to stick with it to give your attempts a fair try. Last - please check in here as often as you need to, and as you find what works, let us know.
Hi just we are all different . I take three Percocet a day for back it has helped me greatly to have a life . I’ve been on every rls medicine and the worst was Mirapix which destroyed me life for a year till one night I forgot to take it and next morning I could think clearly . Just was put on gabapentin and took it for two nights and thought I was dying . Some people are lucky if the medicine helps their RLS .
There seems nothing in your list that specifically addresses sleep, just akathisia.
Opioids may not help sleep at all, just movement.
Take the greatest, I mean greatest, care with Cymbalta, it is the original drug from hell. The withdrawal can be prolonged, or lifelong. I was on it, so I know. Do not go there if you can possibly help it.
THC may not help sleep either, just pain.
Look into Persantin, which will regulate adenosine levels. Adenosine mediates sleep and balances glutamate, which we have far too much of, thus the hyperarousal and lack of sleep.
rlsfoundation.blogspot.com/...
Hi. I’ve tried xanex. I’ve tried Tylenol pm And other meds like that. They just make me extra tired while I’m dealing with the Restless leg syndrome. I don’t know what other sleep medication to try. I don’t want to try like Ambien or Valium. I’ve had adverse effects from them before. But I snap shot your reply and I’m going to take it to the pain management doctor and ask about her Persantin and discuss cymbalta more. Ty
The benzodiazepines are very tricky for us.
They may help for an hour, then nothing. Some do not work at all.
The one that is consistently mentioned is Eszopiclone.
For the movement problem, only a very strong opioid may help. I use 5 to 10mg methadone, which is magic but does not induce sleep for me. But your doctor may not be willing to go there.
Persantin could help, as it helps me, as may Pratsiol, which is a BP med used off-label. The latter was found to help Iraq veterans with PTSD, and as there is some similarity between the RLS brain and the PTSD brain, specifically with hyperarousal, it is worth attempting. It worked for me.
Both Persantin and Pratsiol are long-established drugs, not new kids on the block. They just happen to have 'side'effects' which are major effects for us.
In my experience with THC, and from reports - official and anecdotal - which I’ve read elsewhere, it does nothing for RLS pain, but is of tremendous help with sleep. CBD alone does nothing at all - not for sleep or pain. This may again be different for different people. I’m grateful that CBD with THC (10%) has helped me sleep soundly for the first time in 40 years - I get 6 - 8 hours a night now. No morning grogginess.
I notice you mentioned Lexapro, which is an SSRI antidepressant, commonly known as a class of drugs to avoid with RLS. They will make RLS worse for 99% of us. Also, tricyclic antidepressants, and any of the "PM" meds over the counter-anything with the main ingredients in Benedryl, which is Diphenhydramine. Kaarina left the link for the Drugs to Avoid list. Even one med can mess up what you are doing, so you really need to get that information and pass it on to your doctor. We DO know how you feel. Sorry you are having such a bad time right now.
Ty ty 😊
RLS is a side effect of quite a few meds which is why others have asked what all you're taking. Cholesterol meds (statins) are notorious for this; could that possibly be what changed 8 years ago??
Hi. I don’t think so as I’ve been on Crestor for probably about that long as well.
I actually take 30 mg of Cymbalta for an unrelated nerve pain without a problem. BUT when I took 60 mg I was pacing the floors all night long night after night. Perhaps you could try 30 mg. However, I think Cymbalta is an antidepressant, not an anti anxiety.
So sorry to hear of your struggle with RLS. I can certainly emphasize with you since I too deal with meds and RLS. Be careful with Cymbalta! I recently weaned myself off that drug because I believe it actually contributed to my restless leg issues. Since being off it, I only need to take one dose daily of ropinirole. Now, having said that, I find that about every three nights I have extreme leg pain/discomfort and cannot sleep. Hence, I often have to take an extra dosage of ropinirole. My doctor was totally upset when I went off Cymbalta and strongly encouraged me to start a different antidepressant, but I truly believe that antidepressants affect RLS. Best of luck! I’m not sure doctors often understand how difficult life can be with this disease!
Greetings. Like others, I'm very sad that you are going through this. As you can tell, there are many people on this site who understand the pain and struggle you are dealing with. You have a true support group here.
One alternative that you may wish to investigate is kratom. A number of contributors to this site have experienced great relief from RLS symptoms as a result. I'm one of them. In fact, I learned about using kratom for RLS on this site. The relief I received was almost magical, and it was more effective for me than oxycodone. It took away all of my RLS symptoms almost immediately, and it has continued to be effective for the six or so months that I've been taking it. In case you aren't familiar with it, kratom is a plant grown in Thailand and other places. The leaves are dried, and then you drink tea made from the leaves, kind of like matcha green tea.
I hope this information is helpful and that you find rapid relief.
Warm regards,
-- Doug
Thank you , I have Kratom which I forgot about will try it tonight .xxx
Call Dr Buchfhurer @ 562-904-1105
this is where you get real help. Someone who knows what the hell they're talking about.
Dr Buchfuhrer.
I am so sorry for your misery. There is a rebate from McKesson for using Neupro which amounts to only a $10 co-pay. It is not dependent on income. (Why don't they just lower the price?) For info on the rebate, call 866-781-7533. There is paperwork involved with each purchase, but it is worth the effort for the benefit. McKesson also provides rebate for Eliquis...and perhaps other expensive meds.
Ty so much!!! BLESSINGS TO YOU
Do the stretch exercises !!
What stretch exercises are you referring to? Ty
I think it may be this exercise: healthunlocked.com/rlsuk/po...
Hi, I just joined the group . I could have written your story . I take Percocet for my back pain. It helps me at night with the rls but then I’m short during the day . I saw a neurologist and he gave me morphine sulfate .
I haven’t taken it as he said I can’t take Percocet with it . But the low dose morphine last 12 hours so I don’t know if it will even work and then I have 12 hours with my legs jumping .
I called my spine doctor and he told me not to take it till he sees me in two weeks . My husband is cracking up with me crying . Like you I never go out . Hope you got sorted .
I wouldn’t be able to go 2 weeks with no relief from RLS symptoms - I’d go crazy. Did you ask if they can get you in sooner, or ask your neurologist to give you something you can take with your other medication? You should not have been given something incompatible with what you already need to take. Good luck!
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