RLS or growing pains?

Potassium   Make sure you get your potassium levels measured before you start adding supplements.    Potassium is dangerous unless carefully controlled and supervised by your doctor.    This is serious and you can ruin some important organs or die from cardiac arrest.   I tried to buy potassium citrate at three pharmacists  the first two wouldnt supply and my regular pharmacist asked me to get a prescription.   So some smart people are concerned about it.

Doctor Buchfuhrer latest ideas on Ferritin is that if you have RLS then you should try to raise your ferritin up to 250 to 300 if required.    This is not likely to be achieved by oral medicine so, if your ferritin is low, you should be asking your GP to arrange an iron infusion.    Doctor Buchfuhrer also says that only two forms of iron infusion help a RLS patient  

Here is a quote from an email from Doctor Buchfuhrer which he has agreed to publishing in a forum.

"We have learned a lot about iron absorption and iron therapy for RLS in the past few years.

 When we quote the goals for iron therapy, it is based on only 2 studies that showed a benefit from oral iron therapy when the serum ferritin is brought above 50-75. That was the guidelines for those studies and they did not look to see if higher levels brought further relief of RLS symptoms. Furthermore, it is very hard to get serum ferritin levels much above 100 with oral iron therapy.

 Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients."

I have seen that iron infusions for RLS are hard to get in the UK.    Is that just through the government system or can you go to a private provider?   As a guide I have been told that privately in Australia it costs about AUD240.   You might need more than one to raise your ferritin to the recommended level.    It can take 12 weeks or longer for the extra ferritin to become effective although I have heard of some people getting overnight relief.    Some people find no benefit unfortunately.   I haven't had an iron infusion yet because I use to refer to the 100 level as satisfactory.    Recently I have been experimenting with a low dose of potassium citrate so I don't want the two experiments to overlap.   My doctor required a heart scan before he would agree to write a prescription.

The potassium citrate has, perhaps, helped a bit with the soundness of my sleep but it hasn't allowed me to depart from my diet.   It was originally recommended in a Bangladeshi report of an experiment where 100% of 68 RLS patients found relief after 45 days.    I am now trying to find out if there are any identifiable differences between those patients and me to see if I can make that 100% of 69 patients.   My doctor says its OK to try but he believes any benefit will be just a placebo effect.

If raising your ferritin doesn't work for you then I have found great relief from adopting a low FODMAP diet (See Monash University, Melbourne) and also excluding gluten, lactose, caffeine and alcohol.    A slightly different diet that also might help is the Low Chemical Diet (Prince Alfred Hospital, Sydney)

Be careful of iron as well.   When I heard that iron was good I started taking huge doses of oral iron and found a slight benefit.   Fortunately the knowledgeable people on this forum advised me that I could kill myself on excessive iron.    I think they were quick enough to prevent any damage to my innards.

Even the diet needs monitoring to make sure you are healthy.   I have lost some excess weight and feel better than ever but that might just because I get some sleep at night.

Incidentally a bit of good news for many is that a bunch of scientists have just mapped the DNA of wheat so they can now start work on getting rid of the things in wheat that so many humans are allergic or intolerant to.  It took 15 years so perhaps in another 15 years we will be able to eat REAL bread again.   I'm 72 now  so it gives me something to hang on to.   Ah toast and marmalade!!    To be honest its more important that they can also find a way to produce salt tolerant wheat plants so a lot of salt affected land can become wheat farms.     Not that that will matter much unless we humans can stop breeding more humans.   Can the planet support 30 billion people?  Especially when the sea floods the river deltas which are generally highly productive land.  Sorry I'm slipping into science or politics.

Good Luck

Graham

Very topical for me.   I have had rls for 60 years and I didn't associate pain with the crawley, twitchy, kicking sensation that forced me to walk around and around the house all night.   A few years ago I started getting arthritis and sciatica as well as very tight and sore hamstrings.  About 8 years ago I found one of the few GPs who knew a bit about RLS and he said that he had observed that there was an association between sciatica and RLS so we decided to attack the sciatica first in the hope that the RLS would go when the sciatica went.    In recent years I have seen many references by patients in a couple of RLS forums to pain from their RLS.

Excercise with a couple of physios eased most of the sciatic pain in my backside but it didn't go away in my thighs and calf.   Unfortunately my good doctor had to return to Canada so I was a bit lost again.   After that I started on a diet that has been very successful in relieving the RLS symptoms to a very low level.

Recently I have been surprised that my arthritis and sciatica pain has also reduced to a much more acceptable level.     It reached the point where I was limited in walking distance and speed and I had to take an elevator rather than struggle down stairs.   Now I get some pain walking and some car seats seem to put pressure on the back of my thighs and cause enough pain to stop me driving long distances.   But, in general, the pain is much less than it used to be.

So, after all that,  the point is that my long term RLS and long term pain have both been relieved at about the same time.    Hence I have just recently been wondering if I have really been feeling the pain of RLS that other people have been talking about.   Perhaps there are two types or maybe stages of RLS one with just the uncomfortable (unbearable ) feelings of the need to move and the other with the continuous pain.

I wonder how many people with the uncomfortable feeling RLS are also experiencing pains in their muscles that they think are part of the same disease?

I know that sciatica can be a bit of a mystery because you think its in the legs and thighs while its really caused by something like a spinal problem or the muscles in the buttock pressing on the sciatic nerve.

Graham

waiting to see if anyone can answer this question?

It seems that my experience is not common but I'm not sure what that means for my missing pain.I've now got a crook back caused by digging a trench for a drainage system.Growing old complicates everything but I don't plan to stop growing old until I reach triple digits!!!

I am doing exercises that really are helping the back.