Totally confused: Hi, I’m new. I had a... - Restless Legs Syn...

Restless Legs Syndrome

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Totally confused

Hishoney profile image
23 Replies

Hi, I’m new. I had a bit of an issue figuring out how this works, but I did it! I have a full bunch of issues, and since Thanksgiving of last year, I’ve had to add restless body syndrome. I never felt like that ever before and it really scared me that I didn’t know how to control it. At least now I know what it is. These are my other issues...Hashimoto’s disease, osteoarthritis, Rheumatoid Arthritis, celiac disease, incontinence, spinal stenosis, I forgot the name of the one where my feet and hands get so cold that they turn blue in the winter. I’m also 71 years old and permanently disabled. I can control those to a point, but have no idea what to do or who to see about help for the RBS. Thank you for letting me join. I’m looking for those pearls of wisdom that I need so badly.

Hishoney

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Hishoney profile image
Hishoney
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23 Replies
nathanwilde profile image
nathanwilde

Hi Hishoney.

Sorry to hear you're suffering from so many ailments.

What medications are you on at the moment? Often RLS is a side effect from medications.

Nathan.

Hishoney profile image
Hishoney in reply to nathanwilde

I’m on Enbrel for the Rheumatoid, I take tramadol, ibuprofen, Wellbutrin for depression, losartin potassium for blood pressure, levothyroxine for thyroid, and 15 mg of morphine because I’m working over several months to stop taking Motrin at all. I used to take 4-5 30 mg tablets, and I hated how I felt, so I decided to get myself off it. Having a hard time with that last one dose, but I’ll do it.

Nathan, thank you so much for taking the time to even ask. Could the RBS be because of the morphine? I don’t have RLS, I went right to the full body restless body syndrome. I feel badly for anyone that has to deal with even the RLS, let alone the RBS.

Thank you so much for the help!!!

Nancy

nathanwilde profile image
nathanwilde in reply to Hishoney

Hi Nancy.

No problem at all. RLS is awful, and if there's a way I can help someone then I would feel very happy being able to do so.

Enbrel: "Restless leg syndrome is found among people who take Enbrel, especially for people who are female, 50-59 old , have been taking the drug for 1 - 6 months, also take medication Methotrexate, and have Psoriatic arthropathy. This review analyzes which people have Restless leg syndrome with Enbrel. It is created by eHealthMe based on reports of 423,830 people who have side effects when taking Enbrel from FDA , and is updated regularly."

ehealthme.com/ds/enbrel/res...

Tramadol: This drug should not cause, but should relieve RLS syndrome, unless you're withdrawing from a dependence on it, in which case the withdrawal will bring bad RLS.

Ibuprofen: Should not cause RLS

Wellbrutin: Should be safe to use with RLS and may actually help to reduce symptoms

Losartin: "Restless leg syndrome is found among people who take Losartan, especially for people who are female, 60+ old , have been taking the drug for 1 - 6 months, also take medication Amlodipine, and have Narcolepsy. This review analyzes which people have Restless leg syndrome with Losartan. It is created by eHealthMe based on reports of 56,396 people who have side effects when taking Losartan from FDA , and is updated regularly."

ehealthme.com/ds/losartan/r...

levothyroxine: This can lower your absorption of Iron, and low iron can cause RLS. You could supplement with ferrous bisglycinate to avoid this.

Morphine: Should provide effective relief for RLS, but again, if you're withdrawing from a dependence on this drug, then this will trigger severe RLS lasting for potentially a number of weeks.

~~~~~~~~~~~~~

I think it's very possible that your RLS is caused as a side effect from the Enbrel or Losartin. Don't stop taking the medications but you should discuss this with your doctor as soon as possible.

Also, make sure you're taking ferrous bisglycinate to make sure there's no iron deficiency.

Also if you're withdrawing from the opiods then be aware that RLS will be severe until the symptoms of withdrawal pass.

I wrote a topic here of things that have helped me:

healthunlocked.com/rlsuk/po....

Keep your head up Nancy. RLS is awful but I think there's probably a cause here and once you nail it I think you can be free.

Best of luck.

Nathan.

Hishoney profile image
Hishoney in reply to nathanwilde

Thanks Nathan, I saw my doctor yesterday and he agrees with you. He also thought that coming down off morphine could be causing a lot of the different issues I’m having lately.

Did you see the thing about shoes maybe having a part in RLS? It very interesting!

in reply to nathanwilde

Hi nathanwilde. I am going to your post you mentioned as soon as I finish this reply. I have been given losartan recently not because of high blood pressure but because my BUN labs were slightly elevated. So I am going to get off asap. My pressure is normal. Re: my elevated BUN I have no kidney problems/normal kidney function and other tests relating to kidney fx are WNL. I did find out something I didn't realize and plan to ask my EP and do more research. The info was so obscure I tripped across it by accident. Apparently contrast dye can affect the BUN causing it to be elevated. Because of frequent testing/ some surgery/ cardiac caths with and without contrast/Doppler studies and on and on (oh and don't forget xrays to diagnose gallstones) I calculate I have had a good amount of contrast dye over the last year and a half. I have no way of measuring how much dye I have actually had but I know when I'm in the hospital many of the tests involving radiology (CT scans etc.) involve contrast dye. Iknow often these tests are necessary and make accurate diagnoses possible but I will be paying attention how often I agree to having contrast from now on. I think different doctors we see for different problems order the test without checking what other tests involving contrast a patient may already have had recently. I'm going to name this 'piecemeal' radiology and begin to keep track of my tests to inform healthcaregivers re previous contrast tests. I never gave this a thought and probably other healthcare workers haven't either. Take care. irina1975

Hishoney profile image
Hishoney in reply to

Hi irina1975, I’m sorry but this came to me instead of Nathan. It’s an amazing article. I found out that my Enbrel could definitely be causing it, but my Rheumatologist told me to decide which med was helping more. She was right. The Enbrel is without a doubt. Nathan has some very good suggestions, though.

Take care,

Nancy

in reply to Hishoney

Thanks I will resend to Nathan.Not that computer-literate but will figure it out. Take care irina1975

jvanw918 profile image
jvanw918

I have no pearls of wisdom but there are some really smart people on here that have plenty. I offer you remote hugs and best wishes instead.

Hishoney profile image
Hishoney in reply to jvanw918

Thank you so much! Hugs and good wishes are ver much appreciated!

kelirock profile image
kelirock

Your hands and feet turning blue in winter is probably Raynaud's syndrome. Your doctor should be able to assist you with this. A neurologist would be able to clarify a diagnosis of restless legs and prescribe appropriate treatment.

Hishoney profile image
Hishoney in reply to kelirock

Thank you very much! You’ve cleared it up for me!

DicCarlson profile image
DicCarlson

That's a lot of autoimmune diseases. I have a friend that sent her Rheumatoid arthritis into total remission with a Ketogenic Diet. The Paleo Diet is a close cousin to Keto. Here's an article... paleoleap.com/autoimmune-di...

Hishoney profile image
Hishoney in reply to DicCarlson

I love the Paleo Diet! I went on it for a bit last Fall, but got bored. I think I’d better try again, but handle it differently. Thank you so much for reminding me about it! I will check out the Ketogenic Diet, too. Again, thank you so very much!

restlessinlondon profile image
restlessinlondon

That's a lot of stuff to contend with! Have a look round the website at rls-uk.org - it gives medications (plus those to avoid), self help ideas, there's a section for professionals that you can show your doctor and, if you are able, some exercises. I do hope you can find a way to reduce the symptoms.

nathanwilde profile image
nathanwilde

Hi Nancy.

I am so sorry but I don't think I can help you with your rash symptoms. It could be so many different things, you really do need to show it to a doctor as soon as possible.

I think you've done the right thing by applying Neosporin on it, this should minimise the risk of any infection.

Definitely go and see a doctor at the soonest opportunity to rule out shingles, and to try to find the cause.

Keep an eye on the rash, if it start to become out of control then go straight to an emergency centre. Also be careful of other symptoms, such as fever and go to an emergency centre if you start experiencing those.

All the best Nancy, hope you're feeling well soon.

marsha2306 profile image
marsha2306

Please please get to a doctor about these blisters. I’m not trying to scare you but my mother has them and hers are caused by an autoimmune disorder. Since Rheumatoid Arthritis is an autoimmune disorder they very well could caused by/from that.

Hishoney profile image
Hishoney in reply to marsha2306

Thank you Marsha, I am planning to see my Primary Doctor tomorrow. It needs debridement of the skin from the top of the blister. If he can’t help me, than I’ve located a Wound Clinic that I will call after talking with him. Thank you! I e never had this before, nor even seen or heard about it before. Thank you so much for your message. I do realize the urgency.

Nancy

marsha2306 profile image
marsha2306 in reply to Hishoney

Hope it all goes well!

Hishoney profile image
Hishoney in reply to marsha2306

Hi Marsha!

I did see my doctor yesterday and he couldn’t see anything causing the blisters. He thought it might be withdrawal from morphine.

I did get the name of a neurologist that I’m planning to see as soon as I can get in there. Hard to get into specialists office without waiting for months!

Thank you for encouraging me to see the doctor, though!

Take care of yourself!

Nancy

marsha2306 profile image
marsha2306 in reply to Hishoney

Well that’s a new one for me. I even just looked up effects of morphine withdrawal and there was no mention of blisters. Look up bulous pemphigoid (maybe spelled it wrong) which is that type of blister due to autoimmune disorder.

Hishoney profile image
Hishoney in reply to marsha2306

Thank you very much Marsha. I’ll do some research. I started to read it and it was above my head, but I’ll check other websites for it. These autoimmune diseases are getting to me lately. I saw a dermatologist who used her fingernail to write on my arm, and she told me I had something else in line with them. I’m seeing my doctor again on Monday and I’ll print it off for him.

Thank you so very much!

Nancy

marsha2306 profile image
marsha2306 in reply to Hishoney

I’m interested in what the docs say. Keep me posted.

Hishoney profile image
Hishoney in reply to marsha2306

Hi Marsha, my Rheumatologist told me to decide if the Enbrel was helping more than the RBS was hurting me. She’s right. Although the RBS is terrible, going without the Enbrel would be catastrophic because it’s impeding the spread of the Rheumatoid. And that is incredibly painful.

Thanks for asking,

Nancy

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