Painfull muscles and joints - Restless Legs Syn...

Restless Legs Syndrome

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Painfull muscles and joints

auldreekie18 profile image
4 Replies

Hi, good people just an update ,getting bad pain muscles and legs ;going into the 2nd week of withdrawal of Pramipexole can hardly walk cannot take any codeine base pain killers due to allergy ,any Ideas what might work short term ,there is no quick fix but to tough it out never thought at 83 would be going through this spoiling my remaining years ,should not be moaning this is nothing compared to what some people have to put up with but a good moan makes me feel better and able ,to cope , keep the faith good people , God Bless you all we will overcome some day.

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auldreekie18
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Joolsg profile image
Joolsg

themedicalcannabisclinics.c...

If you can't take opioid pain killers due to allergy, medical cannabis really helps relieve pain. Sadly you have to pay. It costs about £3 a day.

Have you increased the gabapentin dose? You were on 300mg but will probably need to reach 1500mg to get relief from RLS and RLS pain.

BluGenie profile image
BluGenie

Auldreekie,I’m sorry you are having such a difficult time. I tried going off pramipexole way too fast and had horrible withdrawal symptoms, but not as much pain as you are having. I had to go back up to my 4 mg daily dose and am starting over. I just had a zoom appt with a Dr from the Mayo Clinic who says because of my iron ferritin levels that iron infusions may help with the RLS and he has also prescribed 1 mg klonopin to help me sleep. And that I should be able to begin tapering off the pram. We will see what happens. I don’t know if you’ve had your iron and ferritin levels checked but the Mayo Clinic believes that people w RLS should have a higher level than what the medical field generally recommends. Below is a link for the article I am talking about. You’ll prob have to copy and paste it - I couldn’t figure out how to make it so you could just click on it. As far as pain I have read that tramadol helps some people. I have not tried it. Medical cannabis may help some people also - it has helped me some but I’m in USA.I don’t know if you have access to that in the UK. Hope his helps a little.

mayoclinic.org/diseases-con...

SueJohnson profile image
SueJohnson

As BluGenie mentioned you may be coming off pramipexole too fast. Back up to where you were and either come off it more slowly or by a lesser amount each time, or both. By the way, I don't remember if I asked you if you had your ferritin checked. Improving it to 100 helps 60% of people with RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. When you get the results, ask for your ferritin and transferrin saturation numbers. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months.

Kailua808 profile image
Kailua808

May I ask why you decided to go off the Pramipexole?

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