Hello

[Nettypet68]

Hi, my name is Annette, I'm new to this page, I'm 52 and have suffered restless legs for for 14 years, my late mother was bothered with them as well. My legs have just got worse and worse, I was put on gabapentin for them, didn't work but still on them as I also have Crohn's Disease and an ileostomy, so the gabapentin helps with pain left from my operation but that was 4 years ago. At the beginning of the year I was low in folic and magnesium, so was put on folic acid and had a 2 week course of magnesium, I was better for a month then the legs started up again, had bloods done just on Tuesday and they have come back normal, I am also on pramapexol 2 x 0.08mg tablets in the evening, they have stopped working. I get restless legs in the morning, it's 10.30 a am here in Inverness, Scotland, UK and have had them for the last hour, also get them early evening and at night. I am also on Tramadol for Crohn's pain, that's the only thing that helps my legs but it half zonks me out any help would be much appreciated

[Hidden]

Hello, welcome to this forumand I hope you find it helpful.

There is a lot of information that might help with your RLS. I tend to write too much so I will try and give a few brief points to consider and if you want further detail on anything then you're welcome to ask.

Your RLS appears to be "primary" RLS, i.e. you have an inherited pre-disposition.

The symptoms can be made worse or improved by various factors.

In your case, your Crohns will be a factor in your RLS.

Inflammation is a mediating factor in RLS and this relates to inflammatory chemicals circulating in the blood.

There are various mineral and vitamin deficiencies that are associated with RLS. Correcting these can bring about improvement in RLS. Having Chrohns and an ileostomy means you are risk of having deficiencies due to malabsorption.

There are normally other aggravating factors which can make RLS worse including many medications and foods.

RLS medications vary in their effect and some can cause more problems than help after a while.

The main mineral deficiency associated with RLS is iron. However, although iron deficiency anaemia can cause RLS, iron deficiency can exacerbate RLS even if there is NO anaemia.

If you have regular blood tests for monitoring your Chrohns, the person doing this may or may not be aware of this.

For someone with RLS, serum iron, transferrin and ferritin should be tested, not just haemoglobin.

Ferritin is particularly significant and it has been found that 50% of people with RLS can benefit from having a ferritin level of at least 100g/L.

If your ferritin level is less than 100ug/L you stand a 50% chance of improvement by raising it. This is usually done by iron supplementation. In your case this would be best done with IV iron infusions. Recent research suggests that this has a 60% success rate.

The other mineral is magnesium and you already know about that.

Folic acid is one thing, but hopefully you're tested for vitamin B12 as well as this is a factor in neurological conditions. Vitamin D deficiency is common and correcting this can improve RLS.

Aggravating factors : There are various medicines which can make RLS worse and stopping these or switching to alternatives can make a significant difference.

I imagine you are already careful about diet, but anything which promotes inflammation rather than preventing it can make RLS worse.

Alcohol and sugar should be avoided.

Gabapentin can be effective for RLS, I also take it for both RLS and pain. However it has to be a sufficient dose and it's also significant when you take it. For pain it's usually taken 3 times a day in equal amounts. For RLS it's better if 2/3 of the daily dose is taken 2 - 3 hours before bedtime and the other 1/3 in the afternoon or evening.

900mg is the typical minimum effective dose for RLS, but it may have to be more. If more than 1200mg is needed, it's better to switch to pregabalin.

Pramipexole can be a nightmare! Taking this or any other dopamine agonist i.e. ropinirole or rotigotine can cause major complications. One common complication you're already experiencing is that they stop working.

I suspect you may also be experiencing another common complication called "augmentation". This is where the drug worsens symptoms instead of relieving them. Increasing the dose would only increase the augmentation.

The best way to treat augmentation caused by pramipexole is to stop taking it. This must NOT be done suddenly. It has to be done slowly. You may find by simply doing this your symptoms will improve once you have withdrawn from pramipexole.

here's a link to an article on augmentation

sleepreviewmag.com/uncatego...

It does sound in your case that a low dose opiate might help you if you could get a prescription. Targinact is licensed for RLS in the UK and methadone or buprenorphine can be effective. Your case does fit the criteria for referral to a neurologist who would be at least able, (if not willing) to prescribe an opiate.

I hope this gives you some ideas.

[Joolsg]

Hi Annette

Manerva has given you excellent advice. I strongly suspect your RLS is caused by low iron due to malabsorption caused by Crohns.

It takes a while to raise levels orally so I really think you should push for an IV Iron infusion. This should have been suggested before your doctors put you on dopamine agonists. Try writing direct to the haematology department at your local hospital.

[jan_ET]

Hi Annette I found Tramadol increased my RLS and whole body tremors I have had great success now with Half a Panadeine at night about 6pm.

Hope that helps

Jan Elizabeth