24/7 torture

I don't know how much longer I can take this. I have constant tugging electric prod like feelings in calf, behind knee and thigh and on front of thigh. It is 24/7 and driving me insane. The gp is trialling 20mcg norspan patch which is having no effect whatsoever, just making me have drenching sweats and anxious.. It is so hard to explain the feeling but it is a mixture of the reaction you get when someone runs their fingernails down a blackboard and someone putting an electric cattle prod on back of my leg and running it up and down. I haven't slept since saturday night.......I'm nearly ready to give up and give myself peace. Has anyone got similar symptoms and if so have you found anything that helps?

[Dougg]

Hi Kathandkell.

I hear you and appreciate your painful torture. I'm not from Australia, but have suffered from RLS for years, and I know how horrible it can be. Please hang in. If there is any way to see a doctor who understands RLS, or if anyone from Australia can recommend one, please do so. I have had good success in mitigating RLS symptoms with oxycodone, kratom, and buprenorphine (not all at once, but separately). Each one has its own set of side effects, and different people react differently, but there has to be a med that will work for you. Please know that the people on this forum understand your pain and will do their best to help you as they can. Please don't give up on life. It is possible to have some quality of life with this condition; it just takes finding the right doctor who can prescribe the right medications. And, as others will hopefully post, changing diet has helped some as well. I have seen the effect on those left behind when someone takes their life, and the impact is worse than can hardly be imagined. Your family needs you and would be devastated to lose you. There have to be some doctors in Australia who can help you. Please keep trying to find them. We hear you and are here to support you. 🙏

[Ticki]

hi hon, yes I understand what you’re going through because I’ve been there too many times I live in Washington state and I was at the very very end of my rope when a sweet woman from Australia saved my life by recommending the medication Buprenorphine , fortunately, I was able to find a restless leg specialist in California, who I fly to twice a year for this prescription. Having this all my life this was my last resort since no other medication‘s had worked for long, but I can truly say this one has saved my life for the last 2 1/2 years. I hope there’s some possibility of you being able to at least even try this medication or get to a specialist because it breaks my heart and I know the desperation we can get to and I know that we have to fight that there doesn’t seem to be a light at the end of the tunnel but there is !! you just fight you fight fight for your life .❤️‍🩹

[Oscarcat63]

How long have you been using the patch for ? Did the gp tell you that it may take 3 days to begun to have an effect ? I do hope you continue with it. Please don't give up ! But do phone you doctor if the seating doesn't go away. It is quite common to have sweating at first - it may be that your body is adjusting. Are you still on carbamazepine ? Has that been taken into account with using the patch ? Because any other medicine you are taking might be causing this reaction. A pharmacist would know if you can't see your gp.Again, please hang in there - I am glad that you have a patch: it seems your gp is ignoring that dreadful letter written by your neurologist, that arrogant pig !

[Hidden in reply to Oscarcat63]

Not on carbamazepine anymore, gp is going to up the patch to 20mgs this week. I have been on the 15mcgs for a week now......it is not helping the symptoms yet.....and I can't stop this continual drenching sweating which is very nauseating.

[LotteM]

Norspan is buprenorphine (for those who didn't get that in the original post by K&K.

Your doctor started you at 15mcg/h patch? That is not a low dose and may contribute to the current severity of the side effects. I really hope they start to settle soon. I also had hot flushes/ sweating, and for me HRT helps almost completely, although for most HRT makes the RLS worse. I think Joolsg found out that antihistamines may work against the sweats. If so, try the standard otc cetirizine. Jools, can you confirm?

I worry about the Norspan not really touching your symptoms though. If it remains the same you may have to discuss methadone with your doctor. When I tried to convince my neurologist to let me try buprenorphine or methadone, I mentioned the Mayo Clinic paper, but more importantly, I suggested she could contact Dr Buchfuhrer by email, as he always responds quickly. She did and he did. Email: [e-mail]

Meanwhile, don't give up. It is hard, we understand. It will get better. ❤️‍🩹