My pertinent PMH: I spent 3 weeks in a coma after I fractured my skull in an MVA 35 years ago. My speech is sometimes slurred and I have impulse control issues. 20 years ago, I donated a kidney to my mom and shortly after that RLS started. A doctor prescribed Levodopa, then Ropinole, then Mirapex (1.5mg) which I have taken for 15 years. The impulse control issues of the dopamine agonist combined with the head injuries were problematic and have resulted in maxed-out credit cards, loss of jobs and hypersexuality. My New Years' resolution was to get off the dopamine agonist so I found a doctor who supposedly specializes in RLS (I'll call him Dr. A-hole). He prescribed iron and did a 2-week ween. After 15 days of no sleep, he ordered gabapentin but it was the immediate-release version. I pointed out to him that the time-released gabapentin has shown to be more effective for RLS but he had a protocol and was on it for a couple of weeks. I eventually was given the Horizant brand of gabapentin but unfortunately, that version was also ineffective (which is okay because it was costing $500/month). After 4 weeks of twitching and no sleep, Dr. A-hole finally gave me a script for Oxy, 5mg. but he only gave me 7 tablets. It, too, was ineffective and after a couple of days, I upped the dose to 10 mg and had my first night of sleep. Apparently Dr. A-hole didn't appreciate me taking more than he ordered and he did not renew the Oxy. He now wants me to complete a sleep study to rule out sleep apnea. HELLO! I'M NOT SLEEPING! I asked him if he would refer me to a doctor with compassion and a stronger background in RLS. He apologized and prescribed 7 tablets of 2.5 mg Methadone but like the Oxy, it was ineffective and I up-titrated it to 5mg . . . which resulted in those 7 pills being gone in a matter of 4 days. That was a week ago. Dr. A-hole is clearly not happy that I am not playing by his rules and I am again without an order for an opioid. I am beyond being fed-up with that quack so I'm on my own and am awaiting some Tapentadol from a European pharmacy to manage the symptoms.
I find references to a high correlation of RLS seen in people with Chronic Kidney Disease (CKD) am going by the assumption that it's the kidney donation that is the cause of the RLS, but I don't know what to do about it. I'm consuming about a dozen supplements (including Mucina, Vitamin D, fish oils, probiotics, more Fe and K) but since K is cleared by the kidneys, I'm wondering if maybe I have too much of it in my system. I've read that in cases where a person has OD'd on potassium, doctors have given Calcium, so now I've D/C'd the potassium and am starting on 1200 mg Calcium. I've been able to nap on some afternoons, so I believe I'm making progress, but it is a slow process.
Does anyone have any ideas of why there is a connection between RLS & CKD? Any suggestions of what else I can take? I'm tired of this. Given a gun, I would end it all right now.
Any help would be appreciated.
Thank you!
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ArtHanger
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Oh I am so sorry that you have suffered so badly at the hands of ineffective Drs.
What A$$h0le would prescribe a DA to someone with a head injury and impulse control issues, dear God help the people.
5mg of Oxy? Sure take a glass of milk too it will be as useful. I take 40mg or oxy twice a day and I still get RLS! I think 30mg twice a day is the max dose for RLS but I have been a bit luckier (thanks DR). 5 mg would not have been enough and the dose should have been increased instead of stopped. Had your Dr completed med school? There seems to have been very basic mistakes made.
There are many treatment options still open. Opiates - codeine, Tramadol, Oxy and all the other opiates AT A PROPER THERAPEUTIC DOSE will work. I see you used Tapentadol. I tried that and it was one opiate that was useless - went to top dose quickly with no benefit, switched to Oxy at 10 mg and things were much much better.
Cannabis and Kratom may also be useful drugs, again will need to be watched for any side effects (sorry my knowledge of head injury is poor), but should be safer than the DA's, unless they are illegal (that brings the real problems with these substances).
Many of us use gentle iron, take in the evening on an empty stomach with a little orange juice to aid absorption, with good results, search for it in the bar at top right of page. I see you take iron but ordinary iron like Galfer can be very hard on the system and is not effective as gentle iron. Also remember how and when to take it!
Vitamins and drugs must be taken properly and some Drs seem to know very little about how taking one drug impacts on the absorption of another. Read up on what is the best way to take each Vitamin to make sure you are taking them properly.
I applaud your generosity at donating your kidney, had I a hat I would doff it that said I am certain I have seen others on here talk about dialysis and kidney problems mentioning that something was exacerbating the RLS, I can't for the life of me remember what they said, sorry. Hang around though I am sure they will post.
What way is your diet, I am sure you will have been given advice, how strict are you with it? Many are pointing towards the biome as a factor so healthy diet is important. I am gluten and dairy free finding a lot of relief especially from GF and if I do take gluten it doesn't be long before my RLS kicks off.
Regarding the Gun, had I one I would not be here typing this to you. I bought enough benzodiazepine at the time when the NPS use was at its height and stuff like that was freely available. I sat staring at the white powder, active in the sub milligram range and I had a couple of grams. I fought hard to work up the courage to take it, however knowing the damage suicide causes I couldn't bring myself to do it (I have several boys and a girl in their teens).
There are solutions, I promise you (and I don't promise lightly). IF you get the right Dr you can gain control. Please do not give up hope, there are plenty of us on here to help. Please feel free to PM me if things get tight. I try and check in a couple of times or more a day if my health allows and I will answer all PM's ASAP.
Please read this as a chance for help if you can source it legally or safely (I don't care about law where my health is concerned and use cannabis regularly despite its illegality here - but then again I am not subject to the prison-industrial complex of the USA like you are):
As regards the kidney, removing one kidney doesnt necessarily lead to kidney failure.
Whether you have kidney faiure or not can be ascertained by undertaking blood tests for renal function i.e. Urea, electrolytes, albumin, creatinine, GFR etc.
There is an association vetween RLS symptoms and chronic kidney failure and particularly end stage failure which realtes to potassium levels.
However, I wouldn't self-fmedicate to either decrease or inrease your K levels without a doctors supervsion, if you do have clinical kidney failure you could be doing yourself more harm than good.
There are other issues which can occur as result of kidney failure, some fatal, so seeing a doctor would be a good idea.
Not kidney failure (my GFR and creatinine are in the upper limits of normal) but when a person has only one kidney, I believe it would fall into the category of kidney disease.
I'd say that if your kidney(s) are doing what they're supposed to do and there's no signs of a physical condition then it's not really classed as kidney disease.
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If your fluid and electrolytes are balanced, urea and albumin levels OK and no acidosis, then your kidney is working fine. If not, then you have kidney failure.
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However, if your kidney is OK then any "extra" K you take will presumably be excreted in which case it's dubious as to whether it's worth taking it or not.
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If you do have kidney failure then taking extra could cause problems.
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Since there's no real evidence that taking extra K is of any value for RLS unless there's a deficiency, it's probably safer NOT to take any if no deficiency is obvious. Sufficient dietary intake should be sufficient.
There is a connection between CKD and RLS - here is an article (just the abstract, you can follow the links to rent/purchase the full article). CKD has an effect of inducing iron deficiency anemia - a key cause of RLS... sciencedirect.com/science/a...
As a follow-up: Looking back at my records from the car accident, a bleed was located in the Basal Ganglia, the part of the brain that regulates movement. I researched it and BINGO! That's the source of RLS. I got rid of Dr. A-hole (who only follows evidence-based practices) and began experimenting on my own with commonly prescribed RLS drugs and found a cocktail that works perfectly for me. Mirapex .250-.375 mg prevents the twitching, 100 mg Nucynta @ HS (bedtime) keeps me from augmenting with the Mirapex, and 1mg of Klonopin allows me to sleep through the Nucynta (which impairs sleep). If I took any of the above by themselves, I required much higher dosages. With the Mirapex I was increasing the the dosage every 2 weeks (due to augmentation). With the Nucynta, I needed 400mg to get me through the night (it has a short half-life) and I slept VERY lightly. With Klonopin, I needed 3 mg to sleep through the twitching (but with it's long half-life I was groggy all day). With this cocktail, after some time on the .375 Mirapex (about a month or so), I find the impulse control issues start to reappear, so I take a break from Mirapex it by increasing the Nucynta to 200mg and adding 200 mg Gabapentin for a couple of weeks. During that time, my sleep is deep (some snoring and am a little groggy when I awake) but after that time frame, my impulse control is fine and can then start back up on the Mirpex at a slightly lower dose. It's a regimen that works great for me but it may be a challenge to get my new doctor to prescribe this slightly untraditional cocktail. I am well stocked with these med in the event that he doesn't go along with it.
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that said I am certain I have seen others on here talk about dialysis and kidney problems mentioning that something was exacerbating the RLS, I can't for the life of me remember what they said, sorry. Hang around though I am sure they will post.
RLS: A degenerative disease?
rls is an awful disease
Seeking advice for changing from Temgesic to Gabapentin for treating my refractory RLS.
Tramadol Prescription for Refractory RLS? 
ATTENTION MEN WITH RLS NOT ON MEDICATION FOR RLS.
