RLS / Nuropathy

[Stdorn]

Has anyone with RLS on this forum been found to have either short fiber or autonomic nuropathy?

[Madlegs1]

A number of sufferers with symptoms like RLS, actually have some sort of neuropathy.The five symptoms of true RLS may be found on this site

rls-uk.org

Menu/ diagnosis.

Good luck.

[Hidden]

Small fibre neuropathy is associated with RLS.

Autonomic neuropathy is not normally associated with RLS.

I guess it's possible to have both e.g. if you have diabetes.

[Stdorn in reply to Hidden]

I have been getting treated for primary RLS for almost 15 years and now my GP thinks it's a symptom of a neuropathy. I do not have diabetes. He is referring me to a specialist unfortunately the only specialist for this that can do the testing is over 2 hours away. I have done quite a bit of my own research on RLS but I have never seen a link to neuropathy before. I figured if anyone knew of a link someone here would. I just followed madlegs1 link and read the five symptoms and I would say I have all 5 but now I guess the fifth one is in question if my problem is caused by small fiber neuropathy. A few of you on this site seem to be so knowledgeable on RLS I'm just wondering if you've ever heard of insomnia presenting before symptoms of restless leg. In my case I started having bouts of insomnia where I would lay in bed all night and if I was lucky I would get an hour or two of sleep just before having to get up to go to work. For several years I had this happen where my insomnia would last about a month and then it would just clear up on its own and I'd be fine for months or even a year at a time only for it to return again usually lasting about a month. The last time it happened as I was waiting for a month to pass assuming I would be able to sleep again this time I wasn't. Eventually 1 month then 2 then 3 passes with no relief. Ultimately I went 9 months with horrific insomnia before finally seeking medical assistance. Sometime during this nine months of insomnia I started having an annoying feeling develop in the calves of my legs that I found was relieved by angling my foot up and down to stretch my calf muscle and relax it. Still to this day I have not seen a good description for this feeling I would not call it pain but it's incredibly annoying and at it's worse if I don't exercise my calves the feeling I would say is worse than pain. If I try to ignore the urge to move I say the feeling makes me want to jump out of my own skin and is unberable. After trying many different drugs for insomnia and none of them working it was found that Tramadol almost completely relieved my symptoms. I have found many antihistamines make my RLS go absolutely berserk. After about 10 years of taking Tramadol my insomnia slowly started to get worse. During the later part of my over a decade or so of treatment I also started having days where I have the RLS feeling in my legs during the day instead of just at night. While my RLS is usually just in my legs I have also experienced it in my back, shoulders, arms, and neck usually in one area at a time although at its worst I had it in my back, arms, shoulders, and neck at the same time causing me to need to wiggle around looking like a madman. During my years of treatment I have also had a lot of issues with pain originally I would have an all over body ache similar to the flu which usually would start in the evening and only go away after getting sleep. I also have a lot of aches and pains in my joints and feeling like my heel is going to rip through the skin of my foot or that all the bones in the top of my foot have been smashed with a hammer. I also have problems occasionally with knee pain back pain shoulder pain and neck pain. While my mother has arthritis my testing for arthritis showed I do not have it. None of these pains are helped at all buy over-the-counter painkillers however the Tramadol does take care of them. My aches and pains have also gotten progressively worse during my years of treatment More recently I have had symptoms of strange Sensations that seemed to fit a nuropathy. I had a day where half of one of my hands and about half of my fingers on that hand went numb and tingly but I had not been laying on my arm or done anything that should have caused it and it lasted the full day. The next morning the tingly sensation had gone away. I've also had it happened a few times where a very small area of my hand almost felt like it was being burned when it wasn't. I have also started getting an intense stabbing pain in my toes almost like someone hammered a screwdriver or knife under my toenail. During a visit to a local neurologist recently I found I have a slight difference in sensation on the top of my to feet. When the doctor ran the cotton of a Q-tip over my right and left foot I found on my right foot it was incredibly ticklish and on my left foot while I felt it the sensation was not very strong. I had noticed on my own that there are some locations on my body I could dig my fingernail in and barely feel anything. In the last few months I have started noticing random firing of muscles usually in my butt or legs. Occasionally the muscle contractions are strong enough to cause me to move my legs a couple of inches but usually it's just a slight twitch. I'm wondering if this is the start of periodic limb movement. Sorry for the length of this post but it has been a lengthy Journey. If you could answer my questions regarding intermittent insomnia before symptoms of RLS and my question about muscle twitching / limb movement I would appreciate it. Also if you have any comments regarding any other part of my story I would appreciate them. Thanks.

[Hidden in reply to Stdorn]

That's a lot of detail, which is great.

It seems quite a complicated picture.

You certainly seem to have RLS. As for the fifth criteria, the symptoms of neuropathy are different from the symptoms of RLS. So I'd say that the RLS symptoms you have are not explained by neuropathy.

However, as I wrote, neuropathy is associated with RLS.

It sounds as if you DO have peripheral neuropathy. The other symptoms you describe, tingling, numbness, burning, stabbing are all symptoms of neuropathy.

Hence you have both.

Why you have the neuropathy needs investigating.

Osteoarthritis (OA) is one possible explanation and this may be related to your knee pain back pain shoulder pain and neck pain. This is not the same as rheumatoid arthrits (RA) which can be investigated with a blood test. If the blood test for RA is negative, it doesn't exclude OA. OA can be detected by MRI or bone scans.

As regards tramadol. It is known to help relieve the symptoms of RLS. However it's also known to cause a condition called "augmentation".

The signs of augmentation are

- RLS symptoms become more intense

- they may spread from the legs to other parts of the body

- they happen more quickly when staying still

- they can happen earlier in the day, not just in the evening.

If that's the case then you could consider stopping the tramadol and switching to another medication. Please note you cannot do this suddenly, you must consult a doctor.

There are two possible options for alternatives to tramadol.

You could switch to an alpha 2 delta ligand, i.e. either pregabalin or gabapentin. These are effective for both RLS and neuropathic pain. They also help sleep.

OR

You could switch to another opioid. Commonly used opioids for RLS are oxycodone, methadone or more recently buprenorphine.

You could discuss these with your doctor.

I'm afraid I cannot really think of any connection between R:LS and the insomnia you experienced before you started having RLS symptoms.

[Stdorn in reply to Hidden]

Thanks so much for your response and your involment in this site.

My mother has osteoarthritis. I had the blood test come back negative, Then they did a regular x ray and said it showed no signs of arthritis. I asked if it was possible I could have arthritis but not bad enough to show up on an X-ray and was told no it should have showed up on an X-ray.

Have had problems with augmentation this was solved by 100mg tramadol every 6 hours. Unfortunately once news of an opiate crisis in the US started I was cut from 8x50mg tramadol to 6 then 4 a day. Unfortunately this led to loss of control over my symptoms and I ended up losing my job as a result.

I have tried Gabapentin on its own but without the Tramadol it only helps a little bit and I am unable to sleep.

Well I had been on tramadol and Gabapentin I had stopped taking the Gabapentin as I found with the 8 tramadol a day it didn't seem to be making any difference. However after my Tramadol was reduced to 4 a day I did notice some improvement by adding the Gabapentin back in. So I'm currently taking 800 mg Gabapentin every 6 hours as well. That has allowed me to get some sleep I still struggle a lot with insomnia.

At one time I had a Doctor who had me on 10 mg of methadone every 12 hours and that had my symptoms completely under control. For the first time in years I could even take a nap at a random time if I feel tired as opposed to having to plan it around a Tramadol and Gabapentin dose. Unfortunately that doctor left the area and I was not able to find anyone willing to prescribe anything but the 4 tramadol a day. My current GP is unwilling to increase my Tramadol dose or to switch me to any stronger opiates.

[Hidden in reply to Stdorn]

I'm sorry. It's unfortunate about the methadone, it would be better than tramadol as it doesn't cause augmentation like tramadol.

Doctors opinions vary about arthritis. I wasn't aware there was a blood test for osteoarthritis. I've never had one. I may be wrong.

I was also told that X rays aren't much good for spinal osteoarthritis. Mine showed up on MRI scan.

I have neuropathic symptoms because of my spine.

The other possibility for neuropathy is a vitamin B12 deficiency.

You could also have blood tests for ferritin and hemoglobin. These may indicate an iron deficiency. Even if your hemoglobin is OK, if your ferritin is less than 75ng/mL your RLS may benefit from taking oral iron.

Here's some info about this.

sciencedirect.com/science/a...

I suggest you see or at least contact one of the good RLS experts you have in the US, e.g. Baltimore, New York or Southern California. They can recommend an opioid to your PCP.

You can email Dr Buchfuhrer about your situation. Follow the link below and click on the yellow email button.

rlshelp.org

He usually answers in 48 hours.

[Stdorn in reply to Hidden]

The blood test was probably four rheumatoid as you mentioned. While my mom had osteoarthritis I think they were looking for any arthritis in me.

It's a shame that when I questioned the X-ray results the doctor didn't mention an MRI.

My Healthcare is now further Complicated by the fact that I have no insurance and no money. I don't know that a RLS expert would want to have anything to do with me and being in Illinois I'm not anywhere near any of the ones you've mentioned.

You mention oral iron is in over-the-counter oral iron. I had read that some people with a normal iron are ferritin content still benefited from iron Infusion. I had mentioned this to my doctor and he said that it was not something they could do and he didn't recommend it as it was too dangerous.

Could you clarify what is it I would be seeking from emailing Dr Buchfuhrer?

[Hidden in reply to Stdorn]

If your ferritin is under 75ng/mL, you may benefit from an over the counter iron supplement, "gentle" iron, ferrous bisglycinate is best.

Take it 30 mins before or 2 hours after eating along with a glass of orange or a vitamimn C tablet.

Only take it once every TWO days, NOT daily.

Your Dr is not quite accurate about iron infusions being unsafe. There is evidence that IV ferrous carboxymaltose is both effective and safe.

Your transferrin level would have to be under 45%.

However, you'd have to pay for it, I guess.

Dr Buchfuhrer is an internationally renowned RLS expert. If you email him telling of your situation and specific issues, he will offer you some advice. You could discuss this with your Dr.

He does not charge anything for this.

[Munroist]

Hi, that is an amazingly comprehensive description and I can say I recognise quite a few of the symptoms from my own experience. I had a spine issue a couple of years ago around the S1/L5 lumbar area which caused acute pain for a few months but over time has largely healed although I have a residue now of neural sensations, many similar to those you describe. I also believe the neural issues worsened a background pre-existing RLS condition which only very rarely showed itself after intense exercise.The neural excitation or sensitivity (it’s been called a few things and is hard to pin down as the evidence is almost 100% my subjective feeling) mainly shows itself in lower leg sensations, many like those you describe such as muscle twitches on the glutes or inner thigh, occasionally sore shins after exercise, feelings of electric current in toes, very sharp pains in ankles or feet when I know I have done nothing to cause them etc. I believed that the neural sensitivity also contributes to sensations above the waist and the area where spine problem was although these are much less frequent and I believe many are the result of the underlying neuropathy combined with anxiety. I have a feeling you may be seeing a combination of three things:

First you seem to have some symptoms in the lower legs which might be neuropathy and might relate to the spine. These do seem to be getting worse from your description and in the same position I pushed for and got an MRI which did indeed show some mild impingement of my lumbar discs on the nerves, although I was told it wasn’t considered serious serious enough for an operation which I agree with. Secondly you do seem to have some neural sensitivity which I think relates to sensations in other parts of the body possibly , and third I suspect there is some stress and anxiety over the whole situation and not being able to work out what is wrong which is combining with the other 2 to exacerbate some of the symptoms and create almost random feelings of numbness, tingling and sharp pains where you don’t expect them. It has taken me personally a while to realise how powerful the mind is and how stress and angst can help generate a whole range of unsettling sensations. As someone who is clearly very observant and aware, I imagine you may find these on your mind a lot which certainly won’t help with any anxiety. In your position I would be trying to get an MRI scan on the spine, although that might be difficult depending on health insurance. They can be a double edged sword because many people have things which don’t look right but actually never cause them an issue but more importantly it is likely to show any serious issue which might need addressing. My view is that whatever the outcome, it will help you move on, most likely it will show there is nothing serious and take some of the stress out of the situation and require you to evaluate with a lifestyle or activity could be changed to help with some of the pain.