I am a 39 year old male who has been suffering from RLS since his early teens. This disease was left undiagnosed for most of my life, finally being diagnosed in my early 30's. However, after waiting what seemed a lifetime to see a Neurologist, he diagnosed Acute RLS *It affects all my limbs acutely and is present 24/7*. I was sent to recieve Electromyography which following diagnosed that i had Sensory Neurpathy, which was the cause for my RLS.
Now i find myself taking medication that would normally be perscribed to a person with severe parkinsons, yet it barely helps control the symptoms. I spend every waking moment of my life in extreme discomfort and pain. The symptoms in my legs are escalating so quickly that walking more than 100 yards is impossible.
Now Im not writing this to get sympathy. I accept what ive got and whilst it can be frustrating and painful, Im managing to live with it. However, my greatest problem is trying to get information from the doctors and specialists. I simply want to know what the future holds for me me as this disease is degenerative and will get worse. I get no answers and am left to walk into my future blindly.
I am genuinely hoping people within this group may have Sensory Neuropathy and will be able to share the experiences with this disease.
Thank you for taking the time to read this. Regards!
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ReBootMDK
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We have all been fobbed off and many of us have had doctors who do not understand the condition etc but I presume these were nerve conduction tests and they found some nerve damage? I do know how severe RLS can be. As romany asks, what meds are you taking? Is it ever relieved by movement? You will get lots of help on here. Have a look at rlshelp.org and rls-uk.org. These sites contain a wealth of information and we all try and help eaxch other.
I take the following medications: Pramipexole 0.52 x 3 daily / Gabapentin 300 1 daily *Dosage due to be increased soon* / Tramadol 50mg 2 x 4 daily / paracetamol 500mg 2 x 4 daily / Mebeverine 135 mg 1 x 3 daily / Omeprazole 20mg 1 daily / Domperidone 10mg 2 x 4 daily.
The medication i take eases the symptoms of the RLS, but the symptoms ive had for years have started to change in the last 6 months. The urge to move which becomes overwhelming has now started to be accompanied by waves of pain in harmony with the pulse sensation. Ive always had RLS acutely in both feet, legs, hands and arms, however, symptoms are generally twice as bad on the left hand side of my body. I now get constant spasms in all limbs that look like im being zapped by electricity, these sumptoms are acutely worse again on the left hand side.
Within the last 6 months i have started to lose sensation in both legs in regards to touch, however, both legs constantly phyisically vibrate and the pulsing sensation of rls in constantly present regardless of what im doing, walking around does ease the symptioms. However, If walking for more than 5 minutes both legs experience intense pain alongside a feeling of extreme cold. If i continue to walk, I lose all sensation in legs with obvious results.
Now im trying to be as brief as possible in describing the symptoms i have, but to be honest i could keep going for ages with the symptoms i have. Its hard to know where RLS stops and Sensory Neuroapathy begins, or which disease is responsible for which.
Both diseases result from a dopamine deficiency. Dopamine in itself effects a myriad of responses in the human body and mind. I find it frustratingly hard to get straight answers from any specialist as they all seem to want to hedge there bets, rather than commit to any definitive answer.
If i can add any other information, I will be happy to do so. And once again, thank you for both your interest and your replies. Regards, AB.
Did you know that Domperidone/an anti nauseant, can make your RLS worse? Anti nausea meds have to be used carefully, but of course if it is better than getting sick and not kleeping your meds down, I suppose. rlshelp.org treatment page, and see list of Drugs and Foods to Avoid. anti nausea meds are a nightmare for a lot of people with RLS. And, anti nausea meds are actually "anti dopamine", and so works against any Parkisnoson's med you may be taking. Nobody has a definitive answer, and I am surprised that they said definitely the Sensory Neuropathy is causing the RLS. They can believe that it does, but to hang onto that one idea, they may be missing something else. RLS is the urge to "have to move" The neuropathy is the cold sensation and the loss of sensation. RLS may have something to do with nerves in some people. I do believe that. There are so many underlying possible causes of RLS, every avenue has to be explored. Sounds like you are doing your homework, REBoot. Also, I see you take omeprazole for your stomach. Just a little note, in case you did not know, and for others reading this, always take those kinds of meds 2 hrs before or after your RLS meds, and most other meds for that matter. The stomach med breaks down acid faster in your gut, so if you take it at the same time , say, as your requip, the extra action of the antacid med breaks down the REquip too fast, and it therefore does not work as well as it should or could.
Hmmm...thats interesting information about the Domperidone...But im in a vicious circle atm of having to take heavy duty meds for the pain and rls, this then tiggers my IBS, which is what the other medication is for. This then worsens my RLS...and so on...It can be a nightmare sometimes.
In regards to doing my homework, I would say 99.9 percent of the information i have found is from the internet. Unfortunately, that sometimes means the information is wrong which is why why sites like this and people like you are worth there weight in gold.
Thank You. I am on this SAME PAGE with all symptoms and also taking similar meds. NOW, I am experiencing this Horrid ITCHING and it keeps me awake for hours in the night. Little sleep causes my days to be a mess and lack of sleep also makes me susceptible to Cold Virus's etc. due to a poor immune system. Oh dear, this just seems to be more than I can handle .. HELP OUT THERE ANYONE ????
Hi Reboot. I have the horrible sensory and painfal aspects of RLS but I haven't been diagnosed with a neuropathy so I can't comment on it all. I know this sounds odd but anti sickness drugs are really bad for aggravating RLS. Have you tried taking fresh ginger with boiling water? I was prescribed domperidon and didn't take it. However I was told that this drug is the only one which does not make RLS worse. Gapabentin is used for nerve pain and there is also a stronger version of it called pregabalin. However I see the gabapentin is being increased. When you speak of pain like a in harmony with your pulse I kind of know what you mean as I have severe stabbing/throbbing to the feet as well and without tramadol and oxycontin I would be in a sorry state. What does the meberverine do as I've never heard of that one? I can't take dopamine agonists like pramipexole but they are effective treatments for RLS for some but they can rebound.Zaps of electricity I experience with RLS. I divide it into painfal symptoms and sensory symptoms. The pain symptoms are generally under control and I use a combination of oxycontin and tramadol for that. May be aask your neurologist about tramadool if the pain is still not tolerable. I am sorry that I do not know much about neuropathy but loss of sensitivity to touch etc sounds like nerve damage. I would try and press your neurologist for moore answers but they may not have them. Not sure if this is of much help.
Thanks for you reply. Its nice to know im not alone, but i have nothing but sympathy for the suffering anybody with these illnesses goes through. Its a silent, invisible hell that we go though on a day to day basis.
The domperidone and mebeverine, along with Omeprazole are tablets i use to control IBS and a possible ulcer.
I already take Tramadol and Paracetamol to combat the pain, but i might need to talk to my doctor to discuss modifying the pain treatment.. Ive never heard of oxycontin...do they have nasty side affects?
I am waiting to go back and see my neurologist regrding the problems, but the time of year is not helpful to sorting things out.
hello i have not been diagnosed yet but about 2 months ago i had an infection like flue them i started by my legs felt like they had weights on them at the bottom part
my hands are tingley and numb i have had some falls i have been feeling nausious but not being sick but i have a lot of disabilaties my doctor has refered me to a neurolagist i have a needle phobia perifual neuropathy but have fibromyalgia calcafied tendonitus and bursitus osteoarthritus osteophorisis vertigo overactive bladder overactive thyroid cataracts tennnis elbow copd costochondritis skin cancer and i have had lung cancer i feel very tired i know that some of the disabilaties i have can have that affect fibro fog but its the heavy legs tingeling my coordination is of i have falls i did not have them before .how were you diagnosed please thank you .
Hi, iam wondering if your pramipexole is still working, pramipexole can stop working over time, its called augmentation, the symptoms can become worse. Maybe changing to a different medication for RLS might help better with the RLS.
Thanks for the reply Elisse. In regards to Pramipexole, I can state catagorically that the tablets are working. When unmedicated which *due to cock ups at the pharmacy* happens occasionally, the symptoms I have previously described become non stop and increase in intensity.
Whilst it is obvious they are not stopping the symptoms, they are indeed blunting the worse aspects of it.
Regards, AB
I dont know if you live in the UK, but here there is an anti nausea tablet called Motilium 10 that is safe to take when you have RLS.
Ive just had probably the worse day and night of my life with RLS and Sensory Neuropathy. My left leg effectively seized up completely and any movement caused excruciating pain. Along with this the burning sensation i normally get in my legs and arms, became intensely worse and covered every part of my body apart from my chest...Even my ears felt like someone was wafting a blow torch over them.
I rang 3 NHS Direct...What a farce...I spoke with 5 people, and none of them, including the bloody doctor had any idea what Sensory Neuropathy was...And the doctor even tried to say i didnt have RLS has it effects my hands and arms along with the standard legs and feet.
Its an absolute joke...I felt absolutely awful and im having to give NHS staff a crash course on Neurological illnesses. To be honest though, I started getting that annoyed it took my mind of how i was feeling. *LOL*
Long story short, the doctor asked ME what i wanted to do. So i asked which of the medication i was taking might help the symptoms ive got. His solution was to start taking Gabapentin 3 times a day, has he reckoned the dosage i was on was effectively pointless.
Does anyone have any opinions on that advice?
Another thing Im worried about is everytime my medication is increased, i experience a brief 'honeymoon period' where the symptoms ease, then suddenly BANG, they symptoms flare up more severe than before.
Is it possible for the body to be countering the medication that quickly and if so, doesnt that imply that there may be something else causing the problems apart from RLS or Sensory Neuropathy.
As peterk has said pregabalin is similar to gabapentin. The dose of gabapentin you are taking is very low, so you do have room to up the dose if you and your doctor decided to. Which med are you referring to that increasing the dose only works for so long before the symptoms return worse than before. I know thats what happens with the pramipexole as i stated to you further up on this thread...
Helo again Andy. Well as I mentioned above pregabalin is a stronger version of gabapentin and it is for neuropathic pain. NHS Direct won't be able to help I doubt as they just deal with day to day stuff. Why don't you try and ring the hospital on Monday and explain that you've had your worst day with it. Also can NHS direct increase your dose of medication? Usually you need yoyr doctor to do that so if I were you I would make contact with them.
I forgot to mention that I take pegabalin and oxycontin and tramadol for the neuropathic pain. I have been up all night with the sensory disturbance and constantly having to move. I just wrote a blog on it regarding sleep deprivation.
Omeprazole is one of those medicines that must be taken at different times
than other medications.
It's highly effective for gerd, or acid reflux, or heartburn. (Prilosec)
It's a chemical that shuts down the pump to make acid in the stomach
for 24 hours. It's a godsend for those who suffer the consequences
of having too much acid being made.
Some medicines need the acid to break down correctly in the stomach
or they pass right on through. Ask your chemist how to take them and
when..make sure you bring your entire list of medications with you
including over the counter medications and vitamins, minerals.
Some medicines need a full glass of water, must be taken on an empty
stomach or full one... so my suggestion is to get the best instructions
from the chemistry.
I only found this out in the past year that it does matter what medicines
are taken with what.. and when.
I wish you the best of luck on your journey to feel better, get more rest.
Karen ~ USA, Wisconsin.
Hello Reboot, you just wrote my story exactly.
Oh I have such good news for you..
I too have sensory neuropathy and rls.
Mine moved as fast as yours did.
Good news for you, Lyrica treats Both rls and sensory neuropathy
quite well. If rls is continuing, you can have both lyrica and a dopamine
agent such as pramipexole.
Even Better News
If your neuropathy is very painful, there are topical medicines (Lidocaine)
for your legs, feet. It will make them numb like when you go to the dentist.
It lasts 3 hours. Or there are pain pills that will help both rls and neuropathy.
Hi Reboot. I am a 30 year old female who is going through hell trying to find out what is wrong with me. I have been diagnosed 4 times now with sensory neuropathy. I have done the nerve conduction study. They have put me on gabapentin and it is not working at all. It is starting to progress to my arms. The doctors don't seem to want to listen to me that I need something for the pain. I am always in bed and can't cover my legs because of the pain I am in. I have to rely on my fiance and mom to take care of my daughters which isn't fair. I want to be able to get my degree but I can't even walk. Somebody please point me in the direction I should go.
Hi paininct , sorry you are having such a rotten time.I know very little about sensory Neuropothy although the doctors thought I may have it at one point, In my case it seems it was a new symptom of restless leg syndrome. What I would suggest is that you write a new post as this may not be picked up by many members as it is an old post from 2 years ago . Hopefully someone will be along then who can help you.I belong to Healthunlocked Pain Concern forum and there are members on there also with Neuropothy. Good luck ...pipps
Having both myself and then spending many days with others that have painful neuropathies, we have at least some form of anemia it seems. That goes for the majority of us anyway and as we talked among ourselves, we found out that vitamin B12 was low as well as vitamin D. Out of 36 people with very painful neuropathy that made all restless when sleeping, just 6 had strong urges to keep moving their legs (even though they were numb, painful, tired legs) and the urge was so strong to move the legs that they put their leg braces on to walk or walked the little that they could on their painful feet. A!l of us think that RLS comes from the excited spinal cord, low iron stores, inability to effectively use dopamine if any is released.
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Also, I see you take omeprazole for your stomach. Just a little note, in case you did not know, and for others reading this, always take those kinds of meds 2 hrs before or after your RLS meds, and most other meds for that matter. The stomach med breaks down acid faster in your gut, so if you take it at the same time , say, as your requip, the extra action of the antacid med breaks down the REquip too fast, and it therefore does not work as well as it should or could. 
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