PLMD now in arms

[Ruffabug]

Hi. I am a new member and live in UK. I have had this condition in my legs for over fifty years but for the past thee I now get in my arms, hands, shoulders and sometimes my head on waking in the morning this only lasts about an hour but is very disconcerting. Does anyone else suffer with this? I am finding it hard to type this as my hands are jumping now. It is 7.AM.

[Madlegs1]

What medications are, or have you been taking?

[SueJohnson]

It can definitely affect any part of your body.

[Marlayna]

I’m sorry yours has traveled. Mine transitioned to arms, shoulders, hands, a few years ago. I am 56.

[Moonwalker1967]

Mine traveled when I augmented on Pramipexole. I have weaned myself off now and am fine. It's very scary when you get it in your arms. What tablets are you on?

[Guitarpickin]

Yes, I think many others have probably experienced it. When my symptoms were at their peak I had it in all the same places you describe as well as my torso and neck. Basically everywhere. But mine was more sporadic and much worse at night than in the day. I’m sorry that’s happening. I hope you can get it to settle down to a manageable level soon.

[MumofSam]

Hi Ruffabug, sorry to hear that your RLS has spread. Mine did as well a few years ago, and I now get it in my left arm, the base and top of my spine. Sometimes feels like it’s also coming from between my shoulder blades and the top of my scalp. So some similarities to you. Not my hands though, thankfully. Have you seen a GP about it at all?

[SueJohnson]

Are you taking any dopamine agonists like ropinirole or pramipexole? Have you tried gabapentin?

[Ruffabug in reply to SueJohnson]

This is a reply to all the kind people who have responded to my post. Yes I have been on Ropinerole for about 20 years and have been on the full dose of 4 mg a day for the last ten roughly. As long as I take these at the correct time each day ( I take 2 at bedtime, one at 12 Midday and one at 6PM) they do control my RLS. I am also on Gabapentin 300mg 3x. Day. This was prescribed as a prophylactic for migraines which I have had for 50 odd years.Both conditions started during my first pregnancy. Also piles! I blame my oldest child for all these! I have always described my RLS as ‘jumpy legs’ and the only relief before I started Ropinerole was walking about. I obviously must have had augmentation but for the past ten years till now I haven’t needed any more. But this PLM in the mornings is augmentation I suppose. What should I do about it? I am already on Gabapentin. Any ideas?

[SueJohnson in reply to Ruffabug]

Yes. You should gradually wean yourself off it. To come off it, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. You are on a low dose of gabapentin. For your night time dose after you are off ropinirole and your symptoms have settled down, increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. 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 the absorption of iron. Don't take tumeric as it interferes 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 8 weeks if you have an iron infusion or after 3 months. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at

Https://mayoclinicproceedings.org/a...

[Ruffabug in reply to SueJohnson]

Thank you so much for your comprehensive reply. I am actually going into hospital tomorrow for a mastectomy for breast cancer so I will defer the RLS problem for a while until I have recovered! I’m told I probably won’t need any further treatment so hopefully that will be the case and I will be able to concentrate on coming off Ropinerole. I will need the full support of my GP and at present I never ever speak to the same one more than once. My practice is a shambles quite honestly. But the others in the town don’t seem any better. Are you in the U.K. Sue? Since Covid we never get to see a doctor, are encouraged to use econsult and are lucky to speak to one on the phone! So to do this complex plan which you suggest would be difficult. However, one thing at a time ! Thanks again.

[SueJohnson]

Oh my goodness. I certainly hope everything goes well with your mastectomy and beyond. Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine. Also talk with the patient representative ahead of time. It is a good idea to bring your own medicine, but don't tell them you have it since they will insist on giving you medicine prescribed by the hospital. That way if they don't follow through you can take the medicine you brought. If it would be difficult to get to it, have a friend bring some. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran for anti-nausea. No, I live in the US. When you have recovered you might want to ask on this forum for a suggestion for a knowledgeable doctor.

[Ruffabug in reply to SueJohnson]

The mastectomy went really well. They allowed me to take aRopinerole just before the op as it was only half an hour before I was due to take my next one. The anaesthetist was very k owledgable about the drug and augmentation and advised me to try to come off it when I am over this breast cancer. ( I should be as it is a small tumour and I was told if I have a mastectomy I shouldn’t need any further treatment) . She then gave me drugs through a large syringe without using any gas. She said it is the gas that makes you sick. I don’t k ow what drugs they were but they worked well to put me to sleep and to eliminate sickness. However during last night I had terrible PLM in my head and shoulders which kept waking me up every few seconds. I had just read about anaesthesia causing the symptoms of RLS to be exacerbated and just wonder if that was the cause. I was so tired and so kept dropping off to sleep but being jerked awake as my head jumped and hit the pillow. I had to take another Ropinerole to stop it which took ages to work, as they do.I will try to make an appointment at my GPSurgery and talk to one about coming off them. Perhaps in a few weeks. Thanks again Sue for your help and support.

[SueJohnson in reply to Ruffabug]

I'm glad the mastectomy went well and they let you take the ropinirole but sorry about the PLM that night. But I bet you are glad it is all over. 😀

[LotteM in reply to Ruffabug]

I seem to recall from other posts and replies on this issue, that it is not the anaesthesia, but the anti-nausea medicines in the cocktail they give you that exacerbate RLS. I hope others will chime in to either second this or correct me.