I used to use Neupro skin patches for several years until I augmented on them. I then went on to Gaberpentin and this helped for a year or so. I also tried Pre Gabalin but both drugs are causing a sensation of burning skin while feeling shivery which is very difficult to bear. I am trying to keep the dose as low as possible but I am suffering with my legs now every night.(I also experienced the same side effects with Tramadol)
My doctor can’t think of anything to help me and I feel as though I’m stuck between a rock and a hard place, and am feeling very down about things.
Has anyone any ideas which might help
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DisneS
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I'm sorry to hear about your situation. I'm afraid however I don't think I can be of much help.
I can say that I too experience burning sensations and shivering sensations. The burning sensations I have had for some years. They come and go and can be very uncomfortable at times.
The shivering I've only just noticed recently.
Because of my experience I wonder if the drugs you mention really are causing these symptoms or if they are coincidental.
What makes you think the drugs are causing the sensations, do you only get them when taking the drug. Do you get them immefiately, or after some time. What happens if you stop taking the drug?
My burning sensation is due to neuropathy and predates me taking Gabapentin, so I know it's not due to that. The recent shivering I'd say is "tremors", small muscle contractions. These seem to be happening as a result of me reducing my Pramipexole rather than taking Gabapentin since reducing the Prami is more recent than starting Gabapentin.
I also see that tremors are listed as a side effect of Gabapentin. There is no mention of tremors in relation to Tramadol as a side effect but I believe it can be a withdrawal symptom. A burning sensation is not mentioned in relation to either.
Unfortunately, as you say, you are between a rock and a hard place. The first thing perhaps you need to do is definitely confirm that the symptoms are caused by the drugs and this would be by stopping and starting them which would affect your RLS symptoms. Maybe alternatively, you could just keep a diary of when the symptoms occur and after a while see if there is a pattern which can be associated with the pattern of drug use.
The human brain is a very efficient pattern recognition machine. It would be very difficult to survive without this ability. However, sometimes it "recognises" patterns that aren't there. The classic example is the astronomer who claimed there were canals on Mars. It is possible you're wrong about the drugs causing the symptoms.
If you're not wrong, it appears that the symptoms can only be relieved by stopping the drugs. You would have to find an alternative for your RLS.
Problematical, because in addition, the alternatives may have the same effect! It may be that you have the same reaction to a number of drugs. If so, this suggests that it something more than a simple reaction.
I hope that you are wrong, because then your doctor needs to investigate other possible causes of your symptoms. In this case you need to offer a very detailed description of your symptoms e.g. where exactly do the burning sensations occur, what parts of the body. Is it always the same parts. What things make the symptoms worse or better e.g. a time of day, early or late, any activity. Any particular movement or position.
This is because the symptoms sound a like neuropathy.
Overall, since very little time is spent talking with doctors, they are also good health pattern recognisers, but are known to jump to the wrong conclusion. So the more information you give them, the more accurate their diagnosis will be,
Thank you so much for your detailed answer.I can. Say for sure that the burning symptom is a result of taking the drugs. I had it when taking Tramadol and it disappeared after stopping the drug. However, it started again when I began taking Gaberpentin and continued with Pregabalin
i confess, I'm struggling to think of any cause of your burning symptom associated with these two medications. The are very different in the way they work and have different side effects. In ither words they really have mothing in common that can ne causing the same symptom that can think of.
There most probably, then, must be a third factor.
Where exactly do you experience the burning sensation,?
Is it always in the same place?
Is it there all the time or doies it vary?
If it varies, when is it worse and when best in relation to taking the medication?
When you say the two medications are you talking about Pregabalin and Gaberpentin? They have a lot of similarities, so you must be thinking of Pregabalin and Tramadol.
The burning usually starts at the back of my neck and the top of my back. From there it spreads to the remainder of my back down to my waist and I sometimes feel it on my chest and the upper part of my abdomen. It always seems to follow that pattern.
Usually it starts in the late afternoon or early evening and becomes more uncomfortable as time goes by. It was very bad last night, it was still there in the morning and is still with me now at 3.30 pm. ( May be connected with the fact that I didn’t sleep because of RLS) Strangely The day before I had no burning at all.
I have been taking the Pregabalin just before going to bed, but have just decided to split the dose and increase it to 175mg from 170.
Thank you so much for trying to help me.
I am just packing to go away so might not be able to reply straight away if you write to me
It sounds like this trip is something you were looking forward to.
One last thought before you go. Sorry if you find my responses bothersome.
I don't think your symptom is directly caused by medication. Apart from what I've written before -
There is usually a relationship between a side effect of a medication and the level of it in the blood stream.
For orally taken unmodified medications, the level of it in the blood should peak between 1 to 3 hours after taking it. It then declines at a rate which is determined by its "half life". The half life is the time it takes for the level to fall by half.
For Tramadol this appears to be 6 hours so 6 hours after it's reached its peak, the level will have halved. 6 hours later it will be half of that (i.e. a quarter). 6 hours later half of that (i.e. an eighth) and so on.
Pregabalin half life is reported to be 6.3 hours.
If your symptom is directly due to both or either you swould expect the symptom to get worse AFTER taking it and to fade within 6 to 12 hours, depending at the minimal level it has to be to cause side effects.
"Indirectly" It's possible that your symptom is however an allergic or inflammatory response. The pattern of the symptom in relation to the level of the agent in the blood might not be as clear cut. But it is unlikely that you would be allergic to both.
However, tablets not only contain the main pharmacological agent but other substances known as "excipients".
BOTH Tramadol and Pregabalin have Lactose Monohydrate as an excipient. They have this in common.
Logically, it's possible, and only a possibility, that you have developed a lactose intolerance. If I can find a relationship between lactose intolerance and your symptom, it would support this further.
I can empathise as burning skin is an aspect of Small Fibre Neuropathy which I have. I have tried various things to alleviate the burning but no success yet. I realise in typing this that my comments are fairly useless but you have my sympathy.
I have been experiencing similar sensations since coming off Pregabalin. I take tingling, itchiness, and chills to be withdrawal symptoms of Pregabalin and Gabapentin. They’re horrible. Have you tried Cannabis and Kratom, though? They help me, but I must say more with RLS than with the withdrawal symptoms. But any help is welcome. Pity about Tramadol, otherwise I’d suggest Oxycodone. Good luck.
I got the burning skin sensation when on pregabalin. It sounds to me like you might need a more potent opioid to treat your legs. You may have to amass some medical evidence to support the use of opioids (tramadol is one of the less recommended opioids for rls as there is some evidence that augmentation can occur on tramadol but not with any of the other opioids). You could start with ordering the medical textbook 'Clinical management of restless leg syndrome' by Buchfuhrer, Henning, Allen etc. It sounds like you may have to educate your GP with some medical evidence. Have you had your serum ferritin checked?
Thanks for your information ID. Unfortunately the Tramadol gave me the side effect of burning skin and I’m beginning to think that there might not be any medication which doesn’t affect me in that way.
I have had my ferritin levels checked. I’m on holiday at the moment so can’t check but think it was around 80
I hope you’re managing to enjoy your holiday. It is sometimes hard to maintain hope when a myriad of meds seem not to work and I’ve certainly been there myself. I would urge you to continue tweaking and trying different meds and different combinations. Sometimes the solution is out there but it takes a lot of trial and error to discover it. Doctors can be a little slow to facilitate us in trying a range of options and sometimes need a lot of pushing. This is a very idiosyncratic conditions.
Thanks very much for your information ID. Actually, since being on holiday for the last five days I’ve only experienced the burning sensation once. I guess the answer must be to move to the Isle of Mull. Wish it were that easy!
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