Gabapentin

[Linda_pink]

Just been started on gabapentin yesterday. had been trying to cope with just iron, Magnesium, healthy diet and cocodomol but pain and restlessness in arms and legs just too bad. have to take 300mg 3 times a day. so hopefully I will get some sleep and some escape from the chronic pain I get during the day.

[Hidden]

Hope things pick up soon. People don't appreciate the agony that comes along with this bloody condition.

On the Iron side it needs to be gentle Iron and taken on an empty stomach in the evening.

Take care.

[Madlegs1]

Good luck with the Gaba- it should ork - but may take some time to be effective- talking weeks here- so don't give up on it too soon.

Do you get the restless legs all the time or just at rest? If at night only - then it might be better to take the whole dose in the evening.Ask your Dr about this.

Also don't forget to take magnesium separately from the Gaba-"at least 2 hrs apart. The mg interferes with the uptake of the Gaba.

You could check out the California rls site about using Gaba. it is - rlshelp.org - you can even email the boss man there, who is a world authority n rls.

Just reread your post- it is unusual to experience "pain" all day only with rls. Perhaps you could elaborate on your symptoms. Check out the uk site - rls-uk.org - for a check list of determining signs of rls. -I have me doubts about your case.!👵

Good luck.

[Linda_pink in reply to Madlegs1]

Ty for all the advice. it's half 2 and wide awake with a very sore, jumpy arm. docs think I may have fibromyalgia as well as rls. my symptoms are that a burning type pain builds in my upper arms and or legs and movement or stretching is the only way to relieve it. it can happen day or night but feels worse at night. my partner says that my limbs move a lot even when I am asleep. got my heated wheat bag on my arm just now and that's giving some relief. I think my doctor thinks it's all in my head as she keeps asking me if I am stressed and about my family situation. I am waiting for blood test results for my b12 and foliate levels. iron, thyroid and inflammation blood tests all came back normal.

[Linda_pink in reply to Linda_pink]

Should have also said I have had restless legs since I was a child, my father also had this. up to approx age 40 I maybe had one night a month where it bothered me and no pain. it's been gradually getting worse in frequency and severity since then and also the pains have started. when I first went to doc I was prescribed amitriptyline and I won't go into how that turned out. That's about when I discovered this forum and tried iron and Magnesium. my symptoms settled slightly and I was getting some sleep but it has now kicked up a gear. at the moment my arms are worse than my legs. sorry for going on but friends, family etc can't really get it. my dad is on strong meds for other conditions he has, and he finds rls irritating rather than debilitating.

[Hidden in reply to Linda_pink]

Hi Linda, sounds like you have PLMD aswell as RLS. your partner saying you move your limbs alot while asleep points to PLMD Periodic Limb Movement Disorder, which happens while asleep and we dont know we are moving. If your father suffers with RLS too, then you have Primary RLS, the genetic type, inherited from your father, which is the same as me and my brother. RLS is progressive and like you mine was mild til i hit my 60's now its severe. There isnt anything we can do to change our defectic gene we inherited. But we can try to do our best to control it. As madlegs has said the Gabapentin takes a while to work, so give it time and i hope it helps you. Most RLSers find they have food triggers or drink triggers, so you could try to work out if you have any. I have no food triggers, but alcohol i cant drink at all, which is the case for most of us. Alot of medications even OTC ones can make RLS worse. Madlegs has given you a good website to look at it will give a list of things to avoid rls-uk.org another website we use is rlshelp.org its USA based but most of the meds they use we also use if in the UK. Just ignore the high dosage it gives for the dopamine meds as the website hasnt updated the new recommended dosage for those meds.

[Madlegs1]

Sorry for all that- it is so tough when you can't sleep.

The other thing to watch out for , is all the triggers- sweeteners, alcohol , rising agents( I love shortbread- but suffer dreadful rls for it!) various meds- as you discovered with Ami!- and many many more. Try keeping a food diary to see any effects from what you eat or take. Cold medications are a big problwm.

Take care.

[Linda_pink in reply to Madlegs1]

I can no longer take ibuprofen as it seems to set my legs off. alcohol does trigger as well so keep it for very special occasions. I have been prescribed the neurontin gabapentin but reading some links it suggests I should be on the horizant. does anyone know if this makes a difference?

[Hidden in reply to Linda_pink]

Linda, if you are in the UK then Horizant isnt available for us. The difference between the Gabapentin and the Horizant is Horizant is absorbed through the bowel and changes into Gabapentin, its also a slow release med.

[Graham3196]

I notice you said a "healthy" diet. There is some recognition that what we eat can stimulate RLS. I have been eating according to the Monash University low FODMAP diet that was designed for IBS patients. It seems to have some benefit for restless leg victims. It is far from what would normally be called a healthy diet but perhaps it will help you. Please search this forum and Patient.co.uk to find lots of posts about this. The initial stage of the diet is called the elimination stage and is very restrictive but the idea is to cut out almost everything that might upset you and then reintroduce foods one at the time starting with small quantities. This identifies what you can't tolerate until you have a "map" of what you are allowed to eat. Hopefully this map will define a good healthy diet and you have some measure of relief from the RLS. It apparently doesn't work for everyone but in my case its been a great help.

Its worth trying because there it uses no drugs, there are many foods that you can eat, its virtually free and in max 12 weeks you will know if it helps you.

I suggest you get help from a doctor and dietician who have heard of the FODMAP diet. The reintroduction is the difficult period.

I also take some iron (45mg ferrous di-glycinate) at night and I think that helps although I haven't been careful about the empty stomach timing. I will take more care of that and see if it helps.

[Welshone]

Which magnesium are you taķing, I found magnesium oxide very poor for mè, I found magnesium citrate to be much better absorbed, the oxide gave me dihorea (sp?) These dont I only have to take two a day, where the oxide I was taking about 4-5 a day

[Linda_pink in reply to Welshone]

It's the Magnesium oil I am using you apply it to your skin and therefore it eliminates any stomach issues x

[jk3842]

I am 76 and had RLS almost all of my life. I agree that RLS is miserable to deal with. My experience with Gabapentin has been hit and miss. In larger doses it can also cause your personality to become much more aggressive which I have experienced after back surgery. My RLS Doctor ( a Neurologist @ Emory a teaching university in Atlanta ) explained to me that your body does not absorb Gabapentin equality on a daily basis. This can be because what foods that you have consumed and when. I have a daily cocktail of meds that I have to take on a tight schedule.

I just learned that my granddaughter who is 12 has RLS. Very disappointing!

Until someone finds a cure all we can do is learn to deal with it.

One last point is that I have found that not all doctors are equal. The speciality doctors working at a teaching university are typically better for treating RLS than a GP. Some university Drs seem to have access to more resources than a GP. I have had to change doctors 5-6 times to finally find a good RLS doctor.

You can not consume alcoholic beverages and effectively treat RLS. They just don't mix.

Don't give up.

[Linda_pink in reply to jk3842]

Ty for sharing your experiences. my 16 year old son has occasional rls so I am quite upset about that and hope some cure can be found before his gets bad. I am not a big drinker but it's not nice knowing that you can't have a glass of wine when out for a meal. on the plus side I can be the designated driver, if I can stay awake till the end of the evening lol x

[Crp75 in reply to jk3842]

Hello, i have also found myself with "tickly legs" since i was young. Almost took myself out trying to self medicate to get rid of this maddening disease. About 10 years ago, i found that if i drink some RAW WHEAT GERM during an attack, it COMPLETELY SUBSIDES. Raw wheat germ has so many highly absorbable vitamins in it that it is hard to isolate what exactly is stopping to RLS. But it does. EVERYTIME. Just thought i would share.

[Crp75 in reply to Crp75]

Ps, completely subsides in approx 10 minutes.

[involuntarydancer in reply to Crp75]

Wow; fascinating! That’s a first. How do you drink it? Do you dissolve the wheat germ in water?