I have Rls I've had it since I was 13 years old I'm now 54 it's got so bad it's destroying my life I watch that program on channel 5 about Rls I thought I was the only one it's hard to explain the feelings you get I have try'd every think to relive the pain even to the point of causing damage to my body I have twisted my legs to the point that now it hard for me to walk I take pain relief that don't work that well tramadol morphen Rampill any pain relief my doctor think s that it just cramps
It's got to the point now I don't want to live any more but I'm to chicken At the moment I've have taken more tablets than prescribed I have nobody that understands what I'm going through Carnot sleep for long I'm starting to forget thing it a bad situation I'm in
I'm at the end of my tethere I carnt to wait for the end to come
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Amberleaf50
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Oh please don’t do anything. Please contact your GP for an emergency appointment tomorrow and say it is life and death.
You are not alone. RLS can leave you in despair.
Do you have any friends or family who can stay with you until you can see a doctor?
There is help, you just need to find the right meds for you.
I see you have tried Tramadol? and Morphine.
What meds are you now taking, including over the counter meds?
Anti histamines ( and most cough and cold treatments) and anti depressants can make it worse. Low serum ferritin can also cause RLS.
You should ask your GP for an urgent referral to a sleep clinic or a neurologist specialising in RLS. You also need to get bloods taken and the serum ferritin levels should be above 100.
Please stay strong- you are not alone and there are meds that can help.
Pregabalin is an option if morphine didn’t work for you.
Hi joolsg thank you for your reply I told the doctor and he put me on gabapentin but that sent me round the bend I started to get very angry to the point if anybody look at me I wanted to hurt them and my self so I stop takeing them told the doctor wat was happening he sent the crises team and police Then put me on pregablin the same result but it amplified the pain I'm on my forth night with out sleep I got to the point were I'm sorting all my tablets out I have no family I have become a recluse I don't go out I won't answer the door I have lost all trust in people
I just don't want anybody to go through what I have the pain is getting the better of me I have damage my knees to a point I need kne replacement and that to try and stop the Rls nothing seams to work
If you feel you cannot cope any more, please go to A&E. It sounds like you are very sensitive to meds in which case you should start any new med at the lowest possible dose and increase very, very slowly. that way, your body may adjust to the meds better.
Please don't give up. Go to your GP with a written list of your symptoms and how you are feeling. Ask your GP to have a look at the RLS UK main website which sets out the meds that can help and the meds that can make it worse.
Amber, familial RLS is a difficult journey, but there is help to be had.
Many of us here have felt as you do and come out of the other side of despair. Many of us have been close to suicide - but now we're doing okay.
The first thing you need to do is change your doctor - he is clueless.
The second thing you need to do is be determined that you will spend time educating yourself - doctors are not much trained in this, if at all, so you must do it.
With a computer and determination you can do all the research you need.
Three sorts of medications help with RLS - dopamine agonists, pregabalin/gabapentin and opioids. Some of us us take more than one of these.
Very important is to have your ferritin levels checked. Lack of iron in the BRAIN is a large part of the cause of this condition - we are not able to store iron where we need it.
Read ALL the information you will find under the headings on the upper right.
Then hit your computer - in the middle of the night, curled up like a pretzel (yes, we know!) - and google whatever your initial readings suggest.
The only way I triumphed was to search for scientific papers, then print them out and take them to my doctor. He knew I was suicidal, and he knew I never slept, he had to take it the science seriously.
I have had RLS for all of my long life, and for many of those years I did not sleep. Now I am just fine, I sleep, I have a life.
Hi manerva thanks for your text I have been on pregablin and gaberpentin and it sent me round the bend I was more suicidal I hate everybody and cause I had them bad thoughts I ended up in a nut house but as soon as they came out of my system I was back to normal but my doctor gave me them not for rls but for pain in my back
I hope this new tablet dnt make me like that but I’ll wait and see wat happens thanks again for the text
Amber, I'm so sorry that your feeling like this.
I am assuming you live in UK, what I say isn't helpful if you aren't I'm afraid.
There is a way through this. You can get relief from your RLS with the right combination of medicines. You really need to see a neurologist, but I'm afraid this will take some time,
You need some immediate psychological support.
DO see a different doctor and insist on referral to a neurologist,
I fear you are in a difficult situation because it might be helpful for you to have some sleep medication, Clonazepam or Zopiclone is OK with RLS, but as you have a history of self harm the Dr might be reluctant to prescribe this.
I'd also say an antidepressant might be helpful. You could ask for one, but again, the Dr might be reluctant, PLUS some antidepressants can make RLS worse. If offered, refuse Amitriptyline, Prozac or Citalopram. Mirtazapine is OK with RLS.
I don't know if it's available where you live but you could also ask for referral to IAPT (Immediate Access to Psychological Therapy). If not, ask about a counselling service. There are non NHS counselling services available, there will be a fee, some charities offer it free or for a reduced fee under some circumstances.
Just talking to someone who listens will help.
If you find it difficult to get your GP to listen, try contacting an advocacy service to see if they will help. You can find out more about this at
In the meantime, don't be ashamed or hesitate to phone Samaritans if you are desperate. They are truly brilliant.
Please don't misunderstand me. RLS is a physical condition and needs medical treatment. The professional psychological support will help you deal with the RLS, I'm not suggesting it will treat it. There is no quick fix for you and it sounds as if you have no emotional support from anywhere else.
I do hope you get to see a receptive doctor as soon as possible. Try to do as Parminter suggests.
Go to your doctor and see if you can get a drug called subutex, I to was like you for many years. The first time I took subutex within 35 mins it completely disappeared, I had the extreme version of it and it was in my arms legs and neck, I know what you are going through and it is pure torture and desperation. But please be hopeful and ask for subutex.
Dear Amberleaf50 ... please do not give time to those negative thoughts, they will only lead you to a terrible place. I've been there for different reasons, truly I have so, I know with deep intensity what you are talking about and feeling.
In terms of your RLS, I've just recently posted my own story where, I found that without medication, of any sort, I can achieve super long-term relief through the use of anti-DVT "Compression Stockings". Here's a link to my message ...
Stopping blood flow would be bad, and that's not the point of what I have said. Applying significant pressure externally to the legs (uniformly) through wearing these stockings for a period of time, in order to produce a rise in the pressure within the actual blood vessels, is more to the point. A bit of patience may be required here.
please call a neurologist office clinic---mayo---John Hopkins---Gainsville fl---tell them
you are suicidal----iron infusions helped me greatly---the leg feelings are terrible---no one can understand unless you have them---it is not like muscle spasms or cramps---much worse.
Please please be careful with your thoughts! I understand you as I too have had RLS for over fifty years, that’s why this site is so valuable to people like us. We are people who suffer as you do with it. But we cannot give up no matter how frustrated and anxious we are are. No one understands you any better than people who are going through the same horrible symptoms. It’s robbing me of sleep and of going anywhere in public - I fidget like a little child-but I’m just trying to get settled in a position where I can sit without my legs causing me to move. I have started acupuncture. I have tried so many things and nothing has helped - I have been on epileptic meds; Parkinson’s meds- but nothing would allow me to sleep. I have a heart condition- having had 6 heart attacks- 11 stents...my cardiologist tells me I need sleep- to get into REM for my heart to get a rest ..but with these legs having a mind of there own - I cannot get a break. Please don’t give up- you are loved by God and your friends—your thoughts are not good for you...seek help from a professional to help you get a better frame of mind. This is important for your wellbeing. I will pray for you to have courage and strength to carry on and seek peace of mind. Get help right away- and talk to people...,keep talking and get the help you deserve. It’s a terrible situation we are in that have this illness. You are not alone. Please get help. We want you here on this site ...
Amber,
I’m headed out the door for the evening, but wanted to stop by and give you a virtual hug and a whole lot of empathy.
These thoughts you’re having need to be shared with people. They are too heavy and too depressing to deal with on your own. Just sitting at home dwelling on your situation is a dis-service to you and could quite possibly be making things worse. If allowed to run amok in your head, thoughts have a way of making the situation worse — a lot worse. I have lots of experience dealing with the «psychology of unwanted thoughts» since I have had depression since grade school. Like Manerva, I am in no way saying that this is a psychological illness. (Believe me, I’ve fought an entire battle with one docctor in particular taking my psychological issues and trying to say that RLS is part of it. The battle is over now, but I was very hurt in the process). Instead, what I’m saying is that by sharing all your hurt and frustrations you are making things more bearable. Even writing things out is therapeutic.
I have also suffered severe RLS for nearly all my adult life and am now 88 yrs. old. A few months ago I was in the same position that you are now, I wanted it all to end but the really lovely people on this site gave me help and advice and I went back to my G.P with much more determination and also took some written material to show her. From then I have been on Tramadol and Temazapam, magnesium, iron and B12. I also use a very heavy hand held electric massager which I use as soon as the horrible feelings and pains come on and I find this really helpful. I was drinking a lot to ease my mental woes and also I thought it helped the pains.( But it didn't I have now given up alcohol completely and this has meant for me that the RLS is much improved. I am at the m oment talking to my G.P about an iron infusion and after a ferritin level test I hope she will agree. I do hope you can find some help from all the people who have replied to you, it is all really good advice. Do look into the hand held percussion massager it is a real godsend to me and may be for you too. Good luck in your fight against this horrible condition
Amber, it is heart breaking to read of your story - sadly an all too familiar one on here. The devastation of RLS and the sense of alienation when others simply cannot relate to it - these cannot be overstated. However, there is always, ALWAYS a way to a better life with RLS. At worst you should email Dr. Buchfuhrer - leading world expert in treatment - he always emails back within 24 hours and he holds fast to the view that it is possible for all sufferers to live an almost normal life. I am almost the same age as you and have pretty bad rls but I manage a fairly good stab at a normal life and when the disease does get in the way I tend to view it as a challenge (although it was not always like this - my situation improved a hundred fold when I started to educate myself fully about it). It would be madness to check out so early for a condition that can be greatly improved with treatment and - at the risk of sounding flippant - with drugs that other people take for recreation! You will be cherished and cared for on this forum and you will pick up tips that you may not have considered previously. Give it a chance.
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