The past couple nights I've struggled to sleep due me constantly having the feeling that I need to move my back. Ill shift around a little and then 10-20 seconds later I need to move again it's strange. It almost feels like a burn and I still have it today but it isn't as bad as on a night. I've tried not moving around to see if it stops but I find this impossible.
I also have involuntary jerks both during the day and night that I can't control. I've heard about the restless leg syndrome but can this be in your back also? I've had this two or three times over the years but this has been going on for a couple of nights now.
Thanks
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taraab
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Welcome to the forum. You will find lots of help, support and understanding here.
Yes it can affect the back. The involuntary jerks are probably PLMD, Both PLMD and RLS are treated the same way.
You don't say but I suspect you aren't taking any medicine for your RLS so I will assume this is the case. If not please tell us what you are taking, how much and when.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), pramipexole (mirapex)or Neupro (rotigotine) unless there is some special reason s/he feels you need it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin) Most of the side effects 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 (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...
If you are already taking pramipexole, ropinirole or on the Neupro patch then your symptoms are a result of augmentation which means you need to get off them. First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole)because the slow releases ones can't be cut if needed. To come off ropinirole (pramipexole), reduce by .25 mg (half of a .088[.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. In this case don't start gabapentin nor pregabalin until you are 3 weeks away from coming off the DA as they won't do you any good while you are on them and wait until the withdrawal symptoms have settled before increasing.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
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
Yes. You can get RLS in any part of your body.I posted a few days ago about a patient with 'restless abdomen'.
Have a look at RLS-UK diagnosis. And read 'useful resources'.
Most women are iron deficient (without anaemia) and iron therapy can resolve the majority of cases.
Simple treatment steps after confirming diagnosis are:
1 Raise brain iron by increasing serum ferritin above 200ųg ideally. Get full iron panel blood tests to include serum ferritin and refrain from iron supplements for 3 days beforehand.
2. Get GP to review and safely replace trigger meds ( anti depressants, sedating anti histamines, statins, diuretics, beta blockers, PPI gastric meds).
3. If 1 & 2 do not resolve symptoms- start gabapentin or pregabalin as per RLS-UK dosing schedule.
4. If 3 doesn't work after 3 months, switch to long half life, low dose opioids.
In your case, iron therapy will likely improve your symptoms.
Whatever you do- refuse to take dopamine agonists (Ropinirole, Pramipexole, Neupro). They are now relegated to 'end of life scenarios' by experts.
Read the posts from the last week. Learn all you can.
I’m not an expert or anything but it could be rls. I’ve had whole body episodes at times. Idk much about the jerking aspect because my rls doesn’t manifest itself that way but maybe someone else here has experienced that symptom. For me mine feels like a creeping crawling feeling, a burning sensation sounds awful. I do hope you can find some comfort here and maybe some direction to find some answers and relief. Unfortunately the best options for relief sometimes end up being pharmaceutical. talking to your doctor can help. I’m always up to chat if you’d like to talk about what you’re going through. 😊
Sounds like you have a great doctor! Over here most doctors just want to prescribe drugs/medication. It makes sense to try and solve medical problems by addressing any deficiencies and/or toxicities first.
I had a doctor who said that most chronic diseases/disorders stem from either a vitamin/ mineral deficiency, or a toxicity of some sort.
Regarding deficiencies, if the gut is not functioning properly (such as from SIBO or IMO), a person won’t be able to absorb nutrients properly from food or supplements.
Also, I’ve noticed that blood tests for things like magnesium often don’t show deficiencies because the normal range is usually set based on the population, not on what is optimal.
YES !Mine began in my legs, and sometimes still occurs in my lower legs at times.
But over the last 3 years, when I was not on medication, it started in my lower back with the overwhelming urge to flex my legs at the hip on both sides of my body. The only relief I got was to get out of bed and walk/stamp/ punch myself in the back.
When I tried to describe the sensation to my gp, I could only say that it was like 'a cattle prod' ...at least he didn't say I was a 'poor cow' though.
Later on, I developed quite severe sciatica (again on both sides) and found out that along with stenosis, I have a bulging and torn disc plus osteoporosis.. I take 300 mg of pregabalin and 750mg of naproxen plus 200 mg of catapress at night. It helped to stop the rls, but does sod all for the pain unfotunately !
I just replied to Swillet50, but in case you don’t see that, and in case this is helpful to you, here is what I wrote…
Over here most doctors just want to prescribe drugs/medication. It makes sense to try and solve medical problems by addressing any deficiencies and/or toxicities first.
I had a doctor who said that most chronic diseases/disorders stem from either a vitamin/ mineral deficiency, or a toxicity of some sort.
Regarding deficiencies, if the gut is not functioning properly (such as from SIBO or IMO), a person won’t be able to absorb nutrients properly from food or supplements.
Also, I’ve noticed that blood tests for things like magnesium often don’t show deficiencies because the normal range is usually set based on the population, not on what is optimal.
Additionally, most magnesium is found within cells, not free floating in the blood. So a normal blood test is not helpful. You could request a RBC magnesium test which is more accurate.
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