HELP!: I have just been diagnosed with... - Restless Legs Syn...

Restless Legs Syndrome

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HELP!

Papa9385 profile image
17 Replies

I have just been diagnosed with RLS based on my symptoms and am taking Gabapentin (for nearly three weeks). It doesn’t seem to ease the pain and discomfort. I have a bucket load of questions:

1. Can I take other pain relief as well? Not that they help much.

2. I have been using a heat bag to relieve the symptoms temporarily. Is that a good idea?

3. How far should I be walking? I used to walk over three miles every day prior to the discomfort getting worse, but have had to cut back.

3. Is there a good sleep position? I am getting up between 02.00 and 03.00 and dozing on the sofa for the rest of the night.

4. Has anyone used CPD and does it work? Should I check with my GP first?

5. What food helps? I’m on a reasonably good diet anyway due to Type 2 Diabetes.

6. Is it really possible for the symptoms to be permanently eased to manageable? I bloody hope so!

Thanks in advance,

Paul

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17 Replies

Hello and I'm sorry to hear you've been diagnosed with RLS.

It's good that you've found this site as you need to find out as much as you can about this condition. You may, in time, discover that being knowledgeable about it can be a key factor.

As regards gabapentin. It has been shown to be effective for controlling RLS symptoms. However what you need to be aware of is that it can take 3 - 4 weeks for it to start working. It's not an instant effect.

Another factor in its effectiveness is the dose. It needs a bit of trial and error with the dose. If you're not taking enough, then it won't work.

The recommended schedule is to start on a dose of 300mg a day (100mg a day if over 65) and then build it up by 100mg a day or 300mg every 2 -3 days. A typical minimum effective dose is 900mg a day.

Furthermore it also depends on the daily schedule. Gabapentin is prescribed for pain or epilepsy on a 3 X a day basis i.e. morning midday and night. For RLS it is better on a once day basis, i.e. at night (up to 600mg). This is because you shouldn't need the same continuous relief with RLS, which being a sleep related disorder only occurs or is worse at night. Also, because you're taking it all at once the level of it in your bloodstream will be higher than if you split the dose, and, when you most need it.

Pain : pain isn't one of the diagnostic criteria for RLS. Many people with RLS don't get pain with it, I don't.

It is possible to suffer pain due to RLS, but when it does occur, I always wonder if it's worth considering that the pain may be due to something else either related to RLS or not. For example pain can be caused by peripheral neuropathy or poor circulation, both of which can make RLS worse.

Your questions

Yes you can take painkillers at the same time as gabapentin. Gabapentin is not a painkiller. It works by de-sensitising nerves. Hence it is most effective for nerve pain, epilepsy and RLS.

It's best however not to take a painkiller regularly because of the problems they can cause long term. Over the counter painkillers can help, some say that paracetamol can help with RLS symptoms, some say ibuprofen. Paracetamol and codeine can help with pain and RLS symptoms, this is because of the codeine in it. If you take the latter however there is a risk of opiate addiction.

If the gabapentin does work for you then hopefully it will deal with all your symptoms.

Basically if anything you try for symptom relief works for you, if it's safe, then it's a good idea. So if you find a heat pad helpful, then it's a good idea. You may find it only works as long as you apply it. If you read other posts on here you will see there are other remedies like this that others find helpful.

Some exercise is good for RLS, but excessive exercise is bad. I wouldn't say walking is excessive. Of course it depends how far and how fast. I don't think there is any general rule, this will vary from individual to individual.

I wonder exactly why you find you can't walk so far, RLS has never limited anything I do. (Except sleeping!)

I don't know what CPD is.

Diet can be factor in RLS. What diet is best for one individuakl may not help another. This can become quite complicated. Too much to cover here.

RLS sufferers should avoid alocohol, sugar and caffeine and possibly MSG.

A low carbohydrate diet can help. Some people find a low oxalate diet, gluten free or lactose free diet can help. An anti-inflammatory diet can help.

There is no cure for RLS, I'm afraid it's life long. Some people can keep it under control for many years whereas as others have to vary the remedies they use from time to time. There's really no predicting.

If your GP diagnosed you as having RLS there are two fundamental steps he/she has missed out apparently.

The first main thing is iron therapy. Iron therapy currently is the only real treatment for RLS, it deals with the main underlying cause of RLS, that is iron deficiency. Remedies like gabapentin only provide symptomatic relief.

It is recommended (NICE 2020) that you have blood tests for iron deficiency, serum iron, transferrin and ferritin.

If serum iron and transferrin are OK then ferritin is the mnost significant of these.

The guidance is that if your ferritin level is less than 75 then it's a good idea to start on an oral iron supplement. How to do this is another story!

see this link

sciencedirect.com/science/a...

The other thing recommended is to explore, as well as or even instead of presribing drugs to make symptoms better, is to see if there's anything making them worse which can be eliminated. These are called aggravating or exacerbating factors.

From a medical point of view this means looking at all the medicines you're taking if any, as there are a very large number of medicines that can make RLS worse.

Not really in a doctors remit diet, as I mentioned before ,can be an aggravating factor.

There is also a bunch of nutrients that you need to ensure you get in your diet and if not then food supplements you can take that might or might not help.

Definitely vitamin B12/folate and vitamin D are important. Some say magnesium helps. A good anti-oxidant might help, such as that found in celery juice (tablets!)

Here is a link to the UK national guidance for GPs on how to manage RLS. It's well worth familiarising yourself, bit by bit, with this information. You can refer your GP to this if necessary.

cks.nice.org.uk/topics/rest...

I do suspect that in your case, RLS isn't the whole picture. You might want to check your symptoms against the RLS diagnostic criteria. Here's a link to them.

irlssg.org/diagnostic-criteria

I hope this helps

Papa9385 profile image
Papa9385 in reply to

Wow! Loads to explore. Thank you!

in reply to Papa9385

Sorry I couldn't answer your question about "CPD" if you explain what this is, then perhaps I can help there too.

Madlegs1 profile image
Madlegs1 in reply to Papa9385

If you decide take mg, then keep it at least 2 hrs away from Gabapentin. It interferes with the absorption.Diet is one of the most important factors in controlling RLS, after iron deficiency has been addressed ( and that applies to only about 50% of sufferers)

Keep a food diary to spot links.

Good luck.

gcruz7141 profile image
gcruz7141

Gabapentin didn't work for me either I have rls for years and tried everything so far what has helped is magnesium oil spray try it

Poppip profile image
Poppip

Sorry this is a quick response but I have honestly tried EVERYTHING. I’ve seen neurologists , different GP’s you name it. I’m completely sorted now on Sublingual Temgesic... worth a try ... good luck, it’s a dose of a condition that there is very little understanding about

Eryl profile image
Eryl

You say that you're on "a good diet because of diabetes" but you don't say whether you still have diabetes. If your diet was really good you would eliminate your diabetes and probably your rls as well.

Papa9385 profile image
Papa9385 in reply to Eryl

Thanks for being so understanding! Not!

in reply to Eryl

Anybody with a health condition that might be affected by diet should consult their doctor before making any changes, especially diabetes.

Reducing carbohydrate intake without adjusting any medication is dangerous.

SueJohnson profile image
SueJohnson

I, too, have pain walking although nobody else on this forum seems to have it. I have pain in the muscles of my legs and prior to increasing the gabapentin, I couldn't sleep at night as a result. Gabapentin at a dose of 1400 mg eliminated that problem, but did nothing to help with the pain during the day. It hurts riding my bike, going down stairs, bending my leg back over 90 degrees, and sitting down. My doctor just prescribed Cymbalta but I haven't gotten my prescription yet so can't tell you if it helps.

Pyrogent profile image
Pyrogent in reply to SueJohnson

Hi SueJohnson interesting to see you write about pain in legs, as you say nobody else seems to have mentioned it. I to suffer from painful legs, but didnt associate it with RLS, I find it hard to walk any distance, even stepping up on a kerb is painful, I wont even consider riding a bike, exercise is to painful, raising my legs is also painful, pain in legs while sitting and annoying pain sometimes while sleeping, my legs constantly feel as though they wont hold my weight, with a feeling my upper legs,thighs could explode at times.

Doctor ordered full blood tests, results where everything was low, B12, Vitamins were all low, magnesium was low, as Iron and others i cant recall, outcome was a coarse of B12 injections (x6) 1 every 2 days over 2 weeks, a course of Magnesium (powder to dilute) Folic acid tablets 1 a day for 4mnths, change of diet to replace all vitamins and iron followed up by another B12 injection at 12 weeks ( x 1 year)after last one as well as full blood tests for a review and further treatment, although still in pain that is easing, i feel a lot better and have been assured that it will take time to get back to "normal", other thing mentioned was perhaps a test to see if I have an intestinal problem that stops my body absorbing the vitamins etc into my system. So far so good.

Perhaps a full blood test could help you determine the cause as it did for me, good luck.

I dont participate much in the group but I am here on the sidelines every day reading up on others experiences and how they are coping each and every day, my best regards to all in the group

in reply to SueJohnson

Cymbalta (duloxetine) is an antidepressant and like most antideperessants may make your RLS worse.

SueJohnson profile image
SueJohnson in reply to

Darn ! Well I will try it and see what happens.

Papa9385 profile image
Papa9385 in reply to SueJohnson

Thank you SueJohnson and Pyrogent. I’m currently trying to do a lot of reading from reputable sources, including your good selves and Manerva, so that I have a consultation with my GP and ask all the relevant questions. I hope the GP appreciates me taking RLS seriously, rather than treating me as a know-it-all, which I am absolutely not. My diagnosis has come out of the blue, as symptoms deteriorated quite quickly four weeks ago. I had ignored them prior to that and didn’t think anything of it. There are signs that the medication might be working at last, which is a welcome relief.

in reply to Papa9385

If the symptoms got worse quite suddenly, then it's possible that something triggered them. Is there any specufic thing that happened just before the symptoms got worse or a while before? This could be starting on a new medication for example.

That's what happened in my case in 2009. Before then I had only mild symptoms, but then I was off wirk for 6 months with stress and was given an antidepressant. That triggered my RLS and I was referred to a neurologist.

I missed the fact that you have diabetes, I' m afraid that can make RLS worse because of its effects on microcirculation and peripheral neuropathy.

Papa9385 profile image
Papa9385 in reply to

Only medication change has been propranolol (beta blockers) that I started taking regularly perhaps 4 weeks prior to RLS flare-up

in reply to Papa9385

Beta blockers can make RLS worse. That may be your trigger.

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