RLS or nor RLS
Hi everyone, just joined the forum out of desperation. In 2001 I started getting what i can only describe as electric shock like symptoms running up and down my legs. This was happening every 5 seconds never stopping, it was horrendous. The doctor had not seen anything similar and didnt know what it was. He thought possibly RLS so he put me on ropinirol 2ml which helped much of the time but eventualy was up to 32ml within a few years. I was getting some sleep but still pacing the floor when ever I was tired or relaxed. I must stress its not a feeling that i have to move, these waves of discomfort is worse than pain, sorry but it is very dificult to explain the symptoms. Most times i am banging my legs with my fists as pain actualy relives the symptom briefly. I have seen me hours and hours banging my legs and pacing the floor. In 2016 I saw a neurologist for the first time as I moved to a city. He put me on Longtec as well as ropinirol but reduced the Ropinirol to 8ml. I am now taking 25ml longtec and 8ml of Ropinirol. However I am not getting much sleep and my legs and now arm have been terrible with the symptoms descibed. The Doctor sent me for nerve conduction tests a few months ago as she though i may have Peripheral Neurophathy but it doesnt appear to be that. No one that I know who has RLS has the symptoms as I have. Is there anyone here?. At the moment I have no quality of life and had to stop working July just past. Has anyone similar to me. I dont have pain just these electric shocks and like someone is pusing something through my muscles. Thank you
High Lori, Thank you so much for your reply, you dont know how great it is to speak to someone who actually listens and understands what I am going through. Regarding augmentation I do not think my Doctor knows about this. At present we are trying to reduce my lontec as it is that we think is causing my tiredness but after reading some of the stories on here it seems ropinirol also makes one tired. i would agree with you that I have had far to high dosage of ropinirol. As i said I was taking 32ml a day for about 5-6 years. It was not until I saw a neurologist for the 1st time did they change it. as regards to the neurologist they saw me 2 times. The first one had not a clue what I had but put it down as RLS as she had to put something down. So i have been treated for RLS since then. as the symtoms have become much worse over the last couple of years my doctor contacted the neurologist team again and was told there was nothing more they could do. To be honest they did not do much apart from listen to me for a few mins and then gave me meds to try. No tests no scans nothing. I am not sure if this is important but very stupidly I had a amphetamine addiction for 10 years and after I came to my senses and stopped, this condition started. I have done a lot of research regarding amphetamine abuse and the damage it can cause and there is a likely hood that this plays a part in the cause. Overloading dopamine receptors..... . I have had a MRI scan of my brain but not of my spine. I know i had a fall when i was very young and 2 bones in my back are fused together but that possibly nothing to do with anything. I am to be honest in despair at the moment. Iam getting about 2-3 hours sleep at night, cant sleep during the day as my legs and arms are so bad. I forgot to mention i get it in my arms to. My arms started a few years ago. I have been reading some stories on here and cant find anyone with the same symptoms. I dont get jerking movements nor the need to move about just these surges going through my body every 5 seconds. This last week has been especialy bad. I am so depressed and so low that it has and is affecting every area of my life. I am unable to do anything.
Kind Regards
Hugh
Hi
. First, do not beat yourself up about the amphetamine addiction. You have nothing to be ashamed of or embarassed about. Addiction is powerful. Look at all the people who are trying to quit smoking and can't, even when they are suffering from late-stage lung disease. Be proud that you managed to break free. That said, I know many people who have used amphetamines for decades for ADHD and we have members of our sister community for narcolepsy who have also used them for years with no known long-term effects. Your amphetamine use might have no relevance at all.
It doesn't sound like either neurologist was even remotely invested in your case. You deserve so much better, but you have believe that deep inside and find the strength to keep looking. You will eventually find a neurologist who cares enough to keep investigating. It is always possible your spinal injury has something to do with it. You never know whether those fused bones might have shift and might be touching or compressing a nerve.
I have a friend who suffered debilitating nerve pain along the side of her head close to her ear for more than two years. She went to seven different neurologists until she found one halfway across the country who took her seriously and investigated. This doctor inserted padding between the nerve and her skull and the pain disappeared. That was about six years ago and the pain has not returned. There is someone out there who will at least try to help you, but you might have to work hard to find that person. Start researching, find a new neurologist and then maybe ask your doctor for a referral. You've got this. - Lori (Team Member)
Hi
. Welcome to the community! I'm glad you found us. My heart goes out to you. It sounds like you are really suffering and have been for a very long time. Unfortunately, the cause of RLS is unknown, which makes it difficult to find one treatment that works for everyone. The flip side of that coin is that you never know when the strangest, thing -- something that seems entirely unrelated to RLS -- might offer complete relief. So, never give up hope. The answer might be right around the next corner.
I'm glad you are seing a neurologist. Have you ever had an MRI of your spine or brain to rule out other neurological conditions that might be a factor? You should be aware, if your doctor has not already told you, that Ropinirol can cause augmentation, which can make symptoms worse. It can be a lifeschanging medication for many people, but it's important to understand when to back off. Here is an article about it: https://restlesslegssyndrome.sleep-disorders.net/augmentation. The other medication you are taking can relieve pain and maybe help you sleep, but it's important to know that it will not make your RLS better.
Many people here have found relief "accidentally," through back surgery, supplements, pain-point pressure, all kinds of things. If you click the arrow beside "treatment" on the homepage menu, you will find articles about devices, iron supplements and lifestyle changes others have found helpful. Maybe something in those articles will at least take the edge off or help you think outside of the box about treatment.
If your current neurologist isn't able to help you, please try another and another and another until you find someone who is willing to investigate every possible avenue for diagnosis and treatment, Neurology is a huge field with multiple specialties and, for all we know about the Central Nervous System, it is still a largely unexplored frontier. You never know what you might find if you just keep looking.
Please know you are not alone in this journey. We are here for you. Thinking of you and sending the best of all wishes your way. - Lori (Team Member)
