Restless body and legs

[Nellies47]

Hi .

I have severe restless legs and hips now for about 2 yrs, and other symptoms ,eg= numbness in both lower legs, cold feet , Fatigue and joint pain. Diagnosed with Primary billary cholangitis and autoimmune inflammatory arthritis in the last 18mths.

In the last few weeks I now have restlessness up to my arm pits. It's scary to watch me try to move all my body in the kitchen at 3am😖😫😫. I'm so exhausted. I've seen 2 neurologist and both offered dopamine antagonist, I refused. I asked for an iron infusion cause my ferriton was 20. Had iron infusion 4 months ago and no improvement........what's next.

My gastologist has referred me to a sleep clinic, anyone have any success with this.

Thank you Nelly

[SueJohnson]

Ask your doctor for gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that 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. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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 at

Https://mayoclinicproceedings.org/a... On the iron infusion have you had your ferritin checked since you had it? Although you have felt no improvement, it could be one of two things: 1) Your ferritin has actually improved to over 100 but you are among the 40% for whom it does not help your RLS or 2) Your ferritin has not improved to over 100 and you need another iron infusion.

[Nellies47 in reply to SueJohnson]

Thank you so much

[Joolsg]

Hi Nellies and welcome.I see from your bio that you mention requip. I'm sorry the iron infusion didn't help but if you're on requip ( Ropinirole) the all over restlessness you describe is classic augmentation.

What dose are you taking?

The only solution is to get off requip by 0.25mg every 2 weeks. You'll probably need an opioid to deal with withdrawal symptoms.

Start now and then when you're down to 0.5mg start gabapentin or pregabalin.

[Nellies47 in reply to Joolsg]

Hi.Hi thank you for reply. No ,not on requip, was offered that and took only a few doses about 2 yrs ago. But I read about it and decided I didn't like the side effects.

[Joolsg in reply to Nellies47]

I'm sorry you're suffering so badly. Are you on meds for the arthritis and cholangitis? You're not on any meds for RLS but you're clearly suffering badly.

After an iron infusion, bloods are usually taken. What were your serum ferritin levels?

You may need another infusion.

Did the neurologists discuss any other meds apart from dopamine agonists?

A sleep clinic is an excellent idea as they will see exactly what is happening and how little sleep you're getting and your gastrologist and neurologist can hopefully come up with the next steps.

I suspect it will be gabapentin or pregabalin if your serum ferritin levels are high.

[Nellies47 in reply to Joolsg]

Hi thank you. It will be interesting to see how sleep clinic goes

[LotteM]

No. Don't ask for gabapentin. Not yet. First find out what is going on. Especially if you have other issues. Have a good read of the updated guidelines in the Mayo Clinic Proceedings that Sue provided. And discuss these with your doctor with a focus on your other issues potentially contributing to you rls symptoms. And have a mew assessment of your iron values following the rls treatment guidelines. Maybe one iron infusion wasn't enough. Maybe something is preventing your body to absorb iron.

Medicines are more easily started than stopped and gabapentin mostly doesn't work right away. If the symptoms are too much impacting your life, discuss with your doctor whether eg a temporary course of codeine or tramadol would help until you get a better idea of what is going on.

I do not contradict that gabapentin is now the preferred starting medicine. But before that, other issues should have been ruled out and also the iron status should have been addressed and evaluated properly. I really wish you to be rid of these awful symptoms, but currently the medical treatment is only suppressing them, and surely no no cure. If there happens to be is a specific cause it is better to have that addressed. In those case, rls can be 'cured'.

Final words. I am not a medical doctor, and few if any on here are. We share experiences and listen to each others stories and support if and what we can. Bit we can never tell you what to do. Always discuss with your doctor, especially when it comes to medicines. As the ones used for rls are far from benign one.

Sorry for the 'rant'. Don't know exactly what triggered it. But sometimes I feel we are suggesting treatment without being a medical doctor and especially without knowing the person. Very often people deal with far more than plain and simple rls. And then it becomes tricky.

[Nellies47 in reply to LotteM]

Hi. Really appreciate you message, thank you. Yes I always felt my rls was connected to something else but my liver specialist and rheumatologist both say its not connected🤨. I will get my iron rechecked, good idea. Also I do have poor iron absorption and bowel issues, also have been checked by gastro....I have have stomach inflammation and normal bowel. Oh I'm just so tired. I plan to ask gp Monday for something for sleep. Have any of you been to a sleep specialist.

[Nellies47 in reply to LotteM]

Hi.Also I do appreciate you can't tell me what to take. But it's so good to hear from others with same experience and hear how they cope. So thank you.

[SueJohnson in reply to LotteM]

LotteM - you know better than that. RLS can't be cured unfortunately.

[LotteM in reply to SueJohnson]

Completely true, Sue! That applies to idiopathic rls. But, secondary rls can be 'cured' when the cause is taken away.

[SueJohnson in reply to LotteM]

Only if the secondary RLS is from another medical problem. There are many other secondary RLS such as pregnancy, and yes low ferritin that can't be cured, only the symptoms controlled.

[Madlegs1]

I tend to agree with Lotte. Look at what medications you are on. Statins, antidepressants or antihistamines - all of which can trigger rls.If you are already on a DA (requip) then augmentation may well be at play.

Finally, do keep an intake diary - food and drink,. As so many things we shove into our gobs cause misery. High salt, processed foods, rising agents, msg. And alcohol. Amongst many.

You wouldn't want to eat or drink anything atall ,atall. 🙄

Good luck.

None of the doctors in Ireland seem to have a clue.

I had educated my last GP, only forhim to retire- now I'm educating a new lot. It's wearing!😝😥

[Nellies47 in reply to Madlegs1]

Hi. Thanks. Yes gp keep saying it a minor thing compared with my liver and arthritis but I have to say it is probably the worst symptom up there with Fatigue and they are both connected.

Any way yes I'm on antidepressant, with 2 chronic life changing diseases I'm not keen to come off them as I'm really finding it had to cope emotionally. I have asked for an alternative that doesn't cause restless leg but I'm told wellbrutin not available in ireland.

So imsure it has contributed to the severity of my rls.

Anyone else on antidepressant.

[Nellies47 in reply to Nellies47]

Food diary is a good idea thanks.

[Madlegs1 in reply to Nellies47]

I'm sorry about that.It is quite likely that is a lot to do with your troubles.

[Madlegs1 in reply to Madlegs1]

Ok- have looked up on Google. Zyban or Welbutrin may be available specifically for smoking cessation -- so maybe you could get hold of a pipe??

Have you had a good chat with the doctor - there may be ways around it.

Or even hop up to Newry?

Slán.

[Nellies47 in reply to Madlegs1]

OK that's a possible way to go for it.....thanks. when you say pop up to newry I presume I'd need a prescription

[Madlegs1 in reply to Nellies47]

Or get friendly with a "black taxi" driver?😝

( That is not a racist remark, before the uninitiated get angsty)

[Nellies47 in reply to Madlegs1]

Hi , seriously I live near the border, do I need to see a gp up north

[Madlegs1 in reply to Nellies47]

Chat to your own GP. Heshe may then realise how serious you are. And may be able to refer you to someone in the North.I think it looks like you need a full review of your medications with reference to RLS.

You could email Dr Mark Buchfurer at this site

rlshelp.org

Small yellow icon on left side of page.

Give him all your details, clearly, and ask for his advice.

He will usually reply within 48 hrs.

[Nellies47 in reply to Madlegs1]

Hi. Great thank you

[LotteM in reply to Nellies47]

Oops, Nellies, the antidepressant and the intestinal problems are two of several main things that may exacerbate (former) or cause (latter) rls. I think they are mentioned in the updated guidelines.

And, oh, for your gp to dismiss rls as minor 🤬. S/he really hasn't a clue. The inability to rest when it is time to rest is torture in itself. And especially the resulting (very) poor sleep will lead to ensuing problems, that will be recognised by your gp. Do mention the increased chance of heart problems and suicidal ideation.

It sounds you gave a complex of issues. Get yourself thoroughly informed and try to educate your doctors. Pick those who really listen and are open to ideas and/or information you provide. You'll probably have to point the way.

A good source is the US rls.org. You need a subscription to access all info, but I find it is worth it. Something like $35 for overseas ones. And reading on this forum will help too. Finally, never hesitate to ask for help or experiences or simply to rant or moan when things are difficult. We're to help and most of all we understand. Do keep in mind that likely your rls is secondary, which bega for extra caution and a different focus.

[Nellies47 in reply to LotteM]

Hi.Thank you so much for your help. I plan to make a call tomorrow to my gp.

[SueJohnson]

What antidepressant are you on. Also If you take any other medicines or over the counter supplements, if you list them here I can tell you if any of them are likely to exacerbate symptoms and can perhaps give you a safe substitute.

[Nellies47 in reply to SueJohnson]

Hi thanks.Ursofalk, Effexor, plaquenil, nexium, hrt, eltroxin, resolor. I take magnesium some nights, I don't think it helps.

[SueJohnson in reply to Nellies47]

Effexor can make RLS worse in some people. If you are taking it for depression or anxiety, a safe substitute is trazodone which has actually help RLS in some cases. Plaquenil has even helped some people with RLS. HRT which contains estrogen can make RLS worse. Nexium is fine although it can decrease iron absorption. If you are taking it for acid reflux, Gaviscon is safe for RLS. Unfortunately Eltroxin can make RLS symptoms worse and I don't know of a safe substitute. I can't find anything on resolor nor Ursodalk so assume they are OK for RLS.

[Jelbea in reply to Nellies47]

My daughter was able to withdraw an antidepressant. Some antidepressants come in liquid form and it is then easier to titrate down very slowly. You can be changed to an appropriate antidepressant and then change to the liquid form. It worked very well for her. Hope this helps.

[Nellies47 in reply to Jelbea]

Oh that's great, delighted for her to get off them. Will speak to gp re same.

[PoorRichard]

Fyi - I had RLS exacerbated by Citalopram and later by Cymbalta. I had no idea before I joined this forum that antidepressants were RLS triggers. (Wellbutrin did not work well for me. ) Ultimately I gave up antidepressants, took anti anxiety CBT, improved my diet, stopped decades of drinking. What a road. This forum is the best.

[Nellies47 in reply to PoorRichard]

Hi thank you. I tried to stop antidepressant last year but the withdrawal was awful. Any tips to stop it, I hate it. Would love to be free of them .

[PoorRichard in reply to Nellies47]

I spent almost a year reducing my Citalopram s-l-o-w-l-y. Cymbalta was easier because I was on a very low dose for only 5 months. (Cymbalta was prescribed for gastrointestinal issues. It helped the GI, but generated severe RLS.)

[Josana13]

I go to a sleep clinic, which is a farce. I do 't think doctors know much, other than to write prescriptions. Or refer u to another doctor. In defense of them, they take on too many patients and do 't have time to study the latest and the greayest.

[Nellies47 in reply to Josana13]

Ah I see. Thank you.