Restless Legs or Nerve Damage?

[Josana13]

Hello my friends,

I Am a 74 year old women and have been suffering from RLS? for many years. The restlessness that I feel is in my feet, the bottom of my feet in the front. When I lay down, my feet start kicking. They feel Ancy and crawly and I have to get up and walk. The pressure on my feet is the only thing that helps. I walk most of the night or use my stationary bike. I don't feel anything on my legs, only the bottom front of my feet.

I took pramipexole for many years until I augmented. Now every night they start when it gets dark or anytime I lie down. I have been sleeping a couple of hours every three nights. I take Oxy for the pain on my back also had surgery on my back due to Scoliosis. The surgeon did five levels on my lower back. He put screws and plastic disks. I have to go through a second surgery where they will put a rod thru 10 levels on my back.

I am sleeping an average of two hours a night,and am so very tired.

I wish to know if anyone with RLS has the same symptoms, also need suggestions for help. I have been taking 1800 mg of Gabapentin every day with no help.

Thank you for reading this, and I pray that I find out what is really going on.

[SueJohnson]

I know previously you were taking part of your gabapentin in the AM. If you are still doing this, I would increase your night time dose every couple of days until you get to 1800 mg. If it still isn't helping then you dopamine receptors have been damaged by your years on pramipexole and you might as well come off it, but do so very slowly so you don't have withdrawal effects. If you do so slowly you won't have any. If it is helping some, then I would increase it. 3600 mg is the maximum, but you probably will want to switch to pregabalin so you don't have to divide the doses. Divide the gabapentin amount by 6 to get the correct pregabalin amount.

[SueJohnson]

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Josana13 in reply to SueJohnson]

OK Sue, here goes: First I wish to thank you for all your help. You are an Angel of mercy. Now back to medicine:

GABA 1 am, 3 at 6 pm, and one at 10 pm, Levothyroxine 8 am, lisinopril. 40mg at 10 am, magnesium Bisglycinate 100mg Stool softeners Chromium Amiodipine.

Calcium 280 mg

ondansetron 4mg.

Bupropion 150 mg

Buspirone C10mg

Chromium

Hydralazine 50 mg 3x day

Iron 28mg

Vitamin D3

Multi vitamin

Laxative

Phentermine 3x

The prescribed are in my Hero. Before Hero, I was all over the place with meds . Hero keeps me in line.

[SueJohnson in reply to Josana13]

I can't find anything for Chromium Amiodipine ( assume you meant Chromium AmLodipine) but I assume it is a combination of chromium and amlodipine. Amlodipine is a calcium channel blocker which makes RLS worse for most people and is used to lower blood pressure. Levothyroxine may make RLS worse, but you obviously need it and I don't know of a safe substitute. Otherwise everything is OK. Don't take your thyroid medicine within 4 hours of taking your iron as it will interfere with the iron absorption.

[Hidden in reply to Josana13]

Hi Josana, buspirone is a dopamine antagonist and something you should talk to your doctor about weaning off since it makes the symptoms of RLS much worse. The good news is, the buspirone has done no harm to your dopamine receptors and may actually have up-regulated them while you’ve been suffering. The hydralazine sounds like a great drug but when I read that it is protective of dopamine receptors in the brain it too sounds like it could make the symptoms of RLS worse. I have to check the half life of the drug. If it’s short then maybe you can take it in morning without ill effect on your RLS. Lastly, I would lose the phentermine if it were me. It stops the uptake of dopamine. That can’t be good for RLS.

You have done yourself no harm. And maybe just the opposite. But it’s time to say bye bye Buspar. You should be taking the ferrous bisglycinate an hour or two before bed on an empty stomach. It stops my RLS in one hour -cold. It may do the same for you. If I were to take it in the morning it would do nothing for my night time RLS.

EDIT: Hydralazine has a short life span in your body. Ask your doctor if it’s ok for your last dose to be around 3pm. I think you will be feeling better very soon. No eating after 7pm

[Josana13 in reply to Hidden]

Thank you SalemLake, I made a copy of your response. There is no way I can ask my DR. to wean me off of Buspirone, after refusing to take other meds he has prescribed. He will definitely blow a fuse. Can you help me wean off of it. I am looking for another Doctor because he is not even responding to me on My Chart.

[Hidden in reply to Josana13]

No, I have no experience with weaning off drugs. I would have to do an internet search and take a leap of faith. You might be better off doing that research yourself. Don’t forget what I mentioned about the other 2 drugs as well as taking your iron in that exact manner.

[SueJohnson]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.

[Josana13 in reply to SueJohnson]

Sue, you are awesome, as always. Thank you.

[Jelbea]

Hi Josana, It would seem possible that you may have some neuropathy affecting the soles of your feet. With your history of back troubles it may be that there is some nerve damage leading to neuropathy. I have had RLS all my life - becoming severe as I got older - and I have neuropathy in both feet and ankles and low back pain with sciatica. The neuropathy started in the soles of my feet. Restless legs can be caused by back problems. When my RLS is kicking off my neuropathy burning pain is also worse. Sometimes heat helps the neuropathic pain and sometimes I have to sleep with my feet outside the duvet to keep them cool.

This is just a thought and I hope you can find an answer to your troubles very soon. By the way the oxy you take should be helping the RLS. Do you take it constantly or just on an "as needed" basis. Good Wishes

[Josana13 in reply to Jelbea]

Hello Jelbea, Thank you for your reply. I believe I have both RLS and Neuropathy. It is so horrible. I am up for 3 or 4 nights with no sleep. Have to walk most of the night or day. The RLS is 24/7 . I then get some sleep for 3 nights and it starts again. The neuropathy happens when I am sleeping wakes me up around 3 am with horrendous pain. My feet feel like frostbite, I think would feel. I have to get up immediately to walk. This is a horrible life. One not worth living. I have an incredible husband, a daughter, had a son but he passed in December last year. Five grandchildren and five great grandchildren and they are who I live for. The neuropathy started when my back pain started. I had one surgery where he put plates and screws on my lower back. I was supposed to have a second surgery the following day where he was going to put a rod through ten levels. I asked if I could do just the one, big mistake, I would have already be done. Pain continues to escalate. Will be going through second surgery soon, waiting for second opinion from Barrow’s neurological Institute in Phoenix, Arizona. I already got a second opinion, but I didn’t like it. Surgeon said that without surgery I would get paralyzed, then not be able to breath and then die. Sounds like a horrible death, so I discounted his opinion, even though he is The director of neurosurgery at Barrows. So here I am doing time and taking space. That is what my brother in law would say. I am grateful that I am not depressed. Sad but not depressed. Sorry, I rattled on and didn’t answer your questions. I take Oxy every six hours. I sleep across the bed to be able to hang my legs down, otherwise I put them on a chair. Be nice if I could take them off every night, but no. Blessings to you from JoAnn

[Munroist]

With all your back issues it’s possible there is some nerve damage or neuropathy, either in the past or maybe the nerves are still being aggravated. There seems to be a link between neuropathy and RLS in that RLS sufferers are more likely to have neuropathy than other people, but it’s not suggested that neuropathy is the cause, although it may exacerbate it. Sue’s suggestions above to manage the RLS are probably your best bet as neuropathy is difficult to diagnose and treat and even if you could there is no guarantee it will help the RLS. Fortunately drugs like gabapentin and pregabalin can help with both neuropathy and RLS.

[Josana13 in reply to Munroist]

Hello Munroist, Thank you for your reply. When I had surgery, I was in the hospital for one week and then transferred to a rehab hospital for three weeks. The entire time.I never had RLS or neuropathy. Go figure. Blessings to you Munroist