hello guys. i have a weird phenomenon. my RLS has progressed severely from just mild symptoms in the legs to severe symptoms in hands, back, neck and chest within a year.
when I first got the symptoms, I tried pramipexole which immediately increased the symptoms. then when I smoked weed, the symptoms spread to my forearms and it stayed permanently. a few weeks later when I took baclofen, a little high dose of 40mg, the symptoms spread to my back and face and stayed permanently. a few weeks later I took dextromethorphan cough syrup which is not supposed to increase RLS, which also increased my symptoms giving burning sensations all over my body which also stayed permanently. then the same thing happened with gold kratom (but not with red). the last time was taking ondansetron for nausea which I looked up and saw it doesn't worsen RLS but nevertheless it increased my symptoms, again permanently. now I have severe symptoms all over my body. my neurologist has no idea. I take pregabalin 75mg about 14 every day along with clonazepam. I feel like a zombie, extremely drowsy with extreme memory and cognitive problems. I have no idea what to do next. has this happened to anyone else?
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kummy24
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Wow kummy24, I feel for you! This must be horrible - trapped in your own torture chamber 24/7. Something else is going on here so first, I would recommend a new neurologist. Second, I would suggest getting off of all medication. I know that sounds harsh but it is necessary. Don't tell your new Dr. what medications you have tried in the past, say nothing. Let the Dr. talk first...make suggestions for medicines that might work (or something non-medicinal) and then you may say that you have already tried that one particular suggestion. Make your new Dr. try harder than your last one; that is there job. Good luck and please keep us posted as to your 'success.'
kummy, please let us know what happened at the Dr.'s, okay? Thanks.
Kummy
As you may realise yourself it seems strange that several medications and other substances that are reputed to relieve RLS or aren't supposed to make it worse appear to be doing that.
This is not intended as any criticism, but I'd say this is so unlikely it's not credible.
I'd agree with Lbf2016 in that you should perhaps try a different neurologist or at least go back to the same and ask them to reconsider.
Firstly as regards pregabalin. It appears you are taking 14 times 75mg a day. If that's correct this is more than 50% over the maximum daily dose, so side effects aren't suprising.
My first suggestion then is that you consider slowly reducing the dose over a couple of weeks.
Obviously I cannot be 100% certain, but the worsening of your symptoms may be coincidental to taking these various substances.
As regards your symptoms.
If when you took pramipexole, you had never taken it before nor any other dopaminergic agent, it is significant that your symptoms did not improve.
There is, I believe, only a relatively small proportion of people who do not respond to these drugs.
Furthermore, this non-improvement is significant in itself irrespective of whether symptoms got worse.
In this case this leads me to question whether you have RLS at all.
It's not possible for me to say because although you say you have symptoms, you don't describe them. Since RLS is diagnosed by its symptoms I cannot judge whether you have RLS or not.
I suspect you do NOT have RLS at all.
If the diagnosis is a self diagnosis, this can be especially unreliable. If the diagnosis was given you by a doctor, even a neurologist, this isn't 100% reliable either.
A neurologist should use the validated diagnostic criteria for RLS. In addition they should be able to interpret your description of your symptoms accurately in relation to the criteria as these are open to misinterpretation.
I suggest you either describe your symptoms in detail, compare them to the diagnostic criteria or, ideally, both.
Below is a link to the diagnostic criteria. Note that for the diagnosis to be confirmed your symptoms must fit ALL the criteria.
I am diagnosed by a neurologist. I'm a medical student myself doing MBBS internship. and I'm familiar with the symptoms of RLS because I've had it before during tramadol withdrawal 5 years ago.
I wish it was something else but the symptoms are very typical. the discomfort goes away when I move my limbs, symptoms increase on rest, increase in the evening and while trying to sleep. and the polysomnography showed increased limb movements leading to arousals.
I have read the whole book by Dr Buchfuhrer and I couldn't anything about what I have. it is pure torture. I reached the current dose of pregabalin by gradually increasing as the symptoms progressed. it's crazy
It sounds crazy and I'm sorry I can't offer you an explanation.
You are still taking an excessive dose of pregabalin.
Logically, since it appears that everything you've tried apparenty makes your symptoms worse, then stop everything.
You may also be aware that RLS is a generic term for a group of symptoms that occur for various reasons.
Not all cases of RLS are due to idiopathic (primary) RLS. You might consider exploring the various causes of secondary RLS. Especially as you say you have had secondary RLS before i.e. opate withdrawal.
Kummy, this sounds awful. I appreciate your struggle. Clearly, yours is not 'mainstream' RLS. Reading your post and additional information, I wonder whether your symptoms are idiopathic RLS. Have you and your neurologist looked into all possible underlying conditions?
Additionally, if indeed you take 14 times 75mg pregabaline a day, I think you already know that that is not a wise approach. If a medicine doesn't work, or ceases to work after some time, it is no use and definitely unwise to keep increasing the dose. Medicines have aimed-at effects, and that is why we take them, but they also have side-effects and they increase with increased doses as well.
Getting off all medicines, slowly, seems like a sound approach. However horrible that will be for at least several weeks. Even better will be to first have a good and deep discussion with your neurologist. Team up and work together. You need to be treated as an individual with a tailor-made approach. General rules and averages work for the majority of people, that is why these general rules exist. But obviously you escape these general rules.
I was on Tramadol, Methacarbonol and Amitriptyline a few years ago and it definitly made my syptoms worse. I even had it in my genitals which was horrendous and really affected my mental health. I weaned myslef off all of these drugs and started taking magnesium supplements and Organic turmeric. Once I had gone through withdrawel sypmtoms I actually made alot of progress with my RLS. I would have may one or two bad nights once in a blue moon. However about 6 months months ago my RLS came back really bad and Im currently trying to manage with codiene without much luck. I have recently started doing Reflexology and Acupuncture but havent noticed any improvement.
Hi Joanne, you certainly seem to have tried a mixture of things.
Opiates can help with RLS on their own. Their effect can be altered however by whatever else you're taking.
If you were taking Tramadol for RLS then it is commonly used for that. If you were taking Methocarbamol at the same time, it probably would have had no effect on your RLS one way or the other. It will neither relieve the symptoms nor make them worse.
Amitriptyline however, is known to make RLS worse. This applies to all tricyclic or SSRI antidepressants So it was probably that which made your RLS worse, not the other 2.
Tramadol on its own might have worked.
Codeine can help with RLS, but it's not the best opiate for RLS, it's not really potent enough and it can cause unwanted effects as well.
Magnesium is often recommended for RLS. It doesn't seem to be clear cut whether it can belp or not. Some people say it helps, some not.
You might not like me writing this but turmeric appears to be the latest fad in super herb universal panaceas about which many claims are made, some of which are dangerous misinformation. The same applies to CBD oil.
Funnily, I can't recall any claims on this forum that turmeric works for RLS.
That's not to say it hasn't any benefits. I like it, very tasty!
Whilst reflexology has some general benefits for well being, again I recall few or no claims that it helps with RLS.
Some claim acupuncture works for RLS, others not. Not many claims either way Similarly for TENS.
If your RLS came back badly and abruptly 6 months ago, this suggests that it may have been "triggered" by something else that changed before that.
The main triggers for RLS are mainly other medications. Antidepressants I've mentioned.
Others include various medicines used for gastric reflux, nausea, vomitting or acidity, particularly proton pump inhibitors. Also included are medicines with antihistamines in them or beta blockers.
A change in diet can affect RLS.
Some other medical conditions can affect RLS symptoms, pregnancy, iron deficiency anaemia, vitamin B12 or D deficiency, hyperthyroidism, disbetes, neuropathy or renal failure.
If there are no obvious triggers, then you may be left with the fact that you have primary RLS which has gotten worse.
In which case it's worth trying all the non-pharmacological measures for RLS first. The main one is iron, particularly your ferritin level. People with RLS can benefit from raising their ferritin level to at least 100ug/L. This is NOT "normal", a normal level is anything above 12ug/L.
Since this may take time, and since it appears you haven't yet tried either of the two main classes of first line medicines for RLS, you might want to consult your doctor about trying one.
The first ones recommended are an alpha 2 delta ligand, either gabapentin or pregabalin. Your doctor may possibly not be aware of this, in which case ypu may need more information about them.
This depends on where you live. I can point you to information relevant to the UK, but not other countries.
If for some reason the ligand doesn't work there are the dopamine agonists. However, I suggest you avoid these if you can.
Here is a link to an overview of the treatment of RLS which I find useful and up to date. I hope you find it helpful.
Thank you for your reply. I dont eat meat so I take Iron daily anyway, also the reason for my B12 supplements. I started the Turmeric as I was diagnosed with Narrowing of the spine, Dehydrated Discs and Bulging Discs. I get nerve pain down the back of my right leg to the knee and a pain in the back of my pelvis on the right hand side. Also I forgot to mention that my RLS is only in my right leg and is more pronounced in the back pelvic area on the right where I get the pain and odly in my big toe more so where the toe nail is. I feel like I could take a sledgehammer to it most nights. I have even tried a cloths peg on my big toe which helps if I can reduce the blood flow to it (probs not a good idea in the long run) Most of the meds I was prescribed were for the pain rather than the RLS but I remember the Triptyline was definitly prescribed for the RLS. The Methacarbomol was swapped out for the Gabapenten but as of now Im on a low dose of codiene, 60mg twice a day. I have still got some Tramadol and occasionally if desperate I will take 3 x 200mg late in the afternoon and it does help. I just dont want to be addicted to Tramadol again as I had really horrible withdrawel from it.
I took pramiprexole and tried 2 droppers of CBD oil with it at night and regretted it hugely. It seemed to completely negate the effects and I had horrid legs all night. Maybe some people just react differently? I certainly did lol
I have had the same experience and cannot begin to describe the unpleasantness of having the symptoms in locations other than the legs. I have had it in the back and the face as well as routinely getting it in the arms. I have taken the same low doses of Oxycodone for years and recently added Methadone which has helped. The symptoms have increased and I may not be getting enough Methadone. May need to add a 3rd dose a day, Fortunately the need to abuse these drugs is very low with people with severe RLS. Am off all the other RLS meds as they did not work. One issue I have is I am a rapid metabolizer of opiates (you could do a drug test on me after taking my usual opiate medications the night before and my drug test would be negative. This complicated the treatment use of opiates in RLS). My advice is to find a good neurologist who deals with this. I had bounced around for a while before I found someone here in Tampa Bay that listened to me and understood the agony of this disorder and that at times I have been almost driven to the point of suicide by my unrelenting symptoms. I actually burst into tears in front of him (I am a 66 year-old grizzly bear type of man) with the kindness and willingness to work with me on this and not view me as a drug seeker or some mental case. They are more likely to be up on the latest uses of medications and treatments.
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