There are many on here who have helped me previously so my sincere thanks for to you all for this. I can't deny I am in a dark place at the moment. I was diagnosed with RLS about a month ago after a sudden onset of symptoms back in the summer. My symptoms typically consist of burning, prickly sensations in my legs and both arms, sometimes even my torso and on occasion my face. It is making my working day unbearable and seriously affecting my life. I seem to have everyting on hold and I'm scared to even go to a friends house through fear of the chair I may be asked to sit on. At the time of diagnosis, my Neuro who diagnosed it said to go away for three months and take iron supplements and then go back and see him. He said my iron levels that the GP sent were normal but said there is evidence of supplementation helping even if levels are normal. I have to say at the moment that it's almost unbearable. I get these sensations when I'm sat or standing. Bizzarely I get them lying down but only if I lie down in the day, not at night so far.What I don't understand is that my symptoms typically start as soon as I wake but what I'm confused about is that I'm currently sleeping well and actually look forward to getting home each night. I have a nice bath, walk my dog and then settle for the night in the armchair. Whilst the sensations are still there, they seem much easier at night (so far at least) and I look forward to bed time. Im also confused about the urge to move. There is no doubt that walking and moving seems to help the sypmtoms but I still feel the sensations. That said, I can sit through the sypmtoms for quite a period of time. I'm not sure I get the uncontrollable urge to move although moving/changing my seating position seems to help. I've always done this though and always seem to sit in one position for about 20 mins before shifting. My neoro said my description of the burning, prickiling were "very typical of RLS" and it is worse sitting or standing but everything I have read confuses me as to why I seem at my best in the evening and night. Is it just that the night time issues have not started yet? Would they have started by now typically when I've had daytime symptoms this bad for about 4 months which seem to be getting worse. Its probably fair to say that my stress and anxiety isn't helping and this has honestly consumed me for months. I have had x rays of my neck, MRI, Brain MRI, Blood test etc - all clear save for some spondylosis in my neck which my GP said was normal for a 48 year old like myslef. I had never even heard of RLS before seeing my Neuro. I also have to be honest and say I have had issues with Health Anxiety in the past and my wife believes that my health anxiety is causing a lot of the symptoms. I confess I've become completely fixated on it since diagnosis. She is honestly starting to lose patience with me. The only relief I seem to get is when I rub "Deep Freeze" cool gel on my legs and arms or also bizarrely when I sit im my car with the heated seats on which seems to distract form the sensations but I honestly can't go on living like this. I have taken Over the counter Co Codamol which seems to take the edge off but not always. I have also considered that this is very much RLS and that I'm just in denial accepting it because of how awful I've read it is. However, I wake every morning dreading the day ahead so I am thinking of going back to see my GP and ask for advice.
I'm so scared of moving to taking medication because of all the awful side effects I've read about and I feel a little ashamed that I should be grateful I can sleep OK at the moment when lots of your lovely people dont have that luxury. I honsetly cant go on like this though.
Any advice or thoughts/opinions from you lovely people would be very gratefully received.
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Kempojj
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I really don't think you have RlS- despite the neurologist' diagnosis. A lot of neurologists know nothing or very little about rls. The absolute need to move is a fundamental requirement of the diagnosis.
I will certainly keep in touch and thank you so much for replying Madlegs. I actually sat and had a heart to heart with my wife tonight and she agrees that I should go to my GP and tell her everything and then just take it from there. Thanks again!
I have to agree with madlegs, it doesnt sound like RLS to me either. The urge to move is one of the important parts of the criteria for RLS. I think you need to go back to your doctor and explain that you dont have the urge to move so how can it be RLS. Your doctor SHOULD know what all the criteria for RLS is. This is the criteria for RLS all must be met to be diagnosed. irlssg.org/diagnostic-crite... I hope you find out what you do have wrong with you, dont let your doctor or any neuro fob you off til they come up with an answer for you.
if it's RLS it must be atypical as it is normally so distinctive that it's worse or only present at night and the urge to move when the feelings are present is impossible to resist. The only way I can avoid getting up and walking if it occurs eg at the theatre is by inflicting some pain on myself and even then it is impossible not to squirm and wriggle ( and feel an embarrassed twat while doing so! )
Perhaps the sensations relate to a neuropathy ( I have that too ) though I'd expect a neurologist to pick that up but not all might. That is diagnosed by nerve conduction studies. Any distraction like moving might make these feelings less prominent.
I'd definitely ask for another appointment.
But as many have said it's the sleep deprivation which is the worst aspect of RLS.
You could I suppose try some treatment and see if it helps. If you're going to I'd pick a small dose of pregabalin which is easy to come off at first. The pitfall here is it also helps with the discomfort of peripheral neuropathy which is how I discovered by chance it helped my preexisting RLS. But it stopped working and I wouldn't take anything unless essential - though I did come very very close to restarting pregabalin last night - didn't as this would be my 3rd attempt and I definitely regretted attempt 2.
Hi all, I was Diagnosed over a year ago with RLS. I too, Do Not have the urge to move my legs.My Neuro knows this,but with the other symptoms, it points to RLS. Had all the tests.I have symptoms in my face torso ,arms and legs/feet of burning,buzzing sensation or trembling.I am also dealing with tremors.My Neuro is a much sought after doc. He specializes in RLS and Movement disorders.I have tried everything it seems.Will try the Neupro patch as you can cut it.Also,the symptoms are all hours.
Hi Tawascan, what tests did you have.? As there are no tests to diagnose RLS. Only by you saying what your symptoms are can RLS be diagnosed. What meds have you tried..?
There ARE no tests, except for your ferritin level to show how your body stores iron. Any other tests would be to rule things out. The official diagnostic criteria says you absolutely MUST have the urge to move to have RLS. irlssg.org
When you say you have tried "everything" , are you sure about that? In 27 years of managing RLS groups, I have found when people say they have tried "everything", they really have not. Not criticizing, just sayin...........you have probably not tried everything that can possibly be tried in a year's time.
A burning prickly sensation is not how I would describe my RLS sensations. Mine is a deep gnawing tickle that builds in intensity until I move the affected limb or it will jerk involuntarily. Movement momentarily eliminates the discomfort but then the gnawing immediately returns. Often I have to move the affected limb (typicality my left leg) every 20 seconds and then the cycle repeats itself. I also don't think you have RLS.
Have you had blood work done? Perhaps you are deficient in some vitamin or mineral. When I was in my teens I went through a period where I was getting a numb and prickly feeling in my face. It made me anxious and I had great difficulty sitting through my school classes. My dad, who was a doctor, suspected I had a vitamin b deficiency. Within a week of taking the b vitamins the symptoms completely disappeared and never returned. Since I was young at the time I'm not sure what type of b vitamins my dad had me take.
Sometimes a virus can cause strange nerve sensations. My sister had all over odd body sensations for about 6 months after a bad virus. It eventually went away and she is fine.
It sounds to me like it might be a dietary problem. Try a 'failsafe' or Fodmap diet for a while. The failsafe diet cuts out all the possible causes at the start, then when you've reached a 'baseline' I.e. not having reactions, you challenge yourself with one group of foods at a time until you've found the culprit. It's a long process, but rewarding and avoids meds which merely mask the problem.
Some aspects of what you describe is almost the oposite of what happens with RLS. Worth investigating further and doing some blood test like JPhickory said.
However, they may be a connection, which is the anxiety behind it which no doubt can make it worse. Why not try a meditation app like Buddhify to calm and relax your mind. I am also taking something called Bach rescue remmedy before I go to bed which seems to work well sometimes. I take the night one but there is one for the day which I take when I feel nervous. I feel that for me it can calm my body down to the level that I can sleep trough the night. Only testing it since 2 weeks but I noticed it reduced my RLS well enough that I sometimes only get it in the morning and then its easier to wake up😊
Thank you Eve 17. I’ll definately look into the Bach remedies.
Health anxiety is an awful thing, isn’t it? I have it too — so much so that I’m having trouble distinguishing what I’m making worse in my mind and what is (I dare say) real. Everything we feel is real, of course, but the subconcious is so powerful that what is real can be made worse by several things (fixation on the problem, past anxieties, past traumas, past bad memories, present anxieties, future anxieties, etc.) It’s a vicious cycle.
What I suggest for you is what my medical team is actually working with me on at the moment — understanding that body-mind connection. Please look at my post «relaxation techniques» (click on my username and scroll down to that post). This particular post describes my experiences seeing a psychomotor pysiotherapist — a PT I was referred to once my psychiatrist suspected a bit of a psychosomatic element at play in what goes on with me. I’ve outlined exercises she has me do to help calm myself down. It is very similar to mindfulness (focusing on the present moment)
Do not ignore your physical symptoms; they are very real. What I’m suggesting is just a supplement to do along with getting to the root of the problem.
Symptoms manifest themselves in two different ways — physically and mentally. We need to focus on both.
I'm 100 percent with Jess3648 on this Kempojj. If you have looked up your symptoms they might fit many diseases, which is a worrying thing; but of course will not be all those diseases. As you have had some scans the worst ones can be ruled out anyway. If your neuro is getting frustrated then she obviously does not suspect a major disease. However she is wrong I think in her RLS diagnosis from my little knowledge and she should understand your anxiety is not your fault.
Your symptoms sound exactly the same as mine and I have a diagnosis of Small Fibre Nruropathy. Diagnosed by nerve biopsies.
I have had the itching, stinging etc for about 8 years and getting worse but like you much worse in the mornings and seems to get better as the day goes on, although stress makes it worse and I had a 3 hour attack last night on getting into bed.
Temperature change is a killer for me and I can’t tolerate the cold at all. However, I can sweat profusely whilst stinging and itching from the cold. It’s bizarre and awful. I got breast cancer 2 yrs ago and that’s not helped!
Have been looking after 5 grandchildren this week end while one daughter is having her 3rd our 6th grandchild. Stayed awake with itching/stinging ...it’s so uncomfortable.
I’m going to try steroids if my doctor will allow. I WILL NOT take Lyrica/pregabelin as know so many horror stories surrounding it.
I am 66 , very active in 3 drama groups and a choir. Currently rehearsing for a big musical and 2 other productions. This awful condition makes life very hard and I feel for my long suffering husband.
Feel so weary with it all but never stop searching for answers.
Perhaps you could nerve biopsies done as yours sounds more like mine.
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Pramipexole - help please
Does this sound like RLS to those experienced?
HELP Please
Help!
Could Shallow Breathing be related to RL symptoms?
