Other causes of RLS

[Faithatthebeach]

Ive had debilitating RLS for a long time, but l also have restless"body". Im diabetic which caused diabetic neuropathy, retinopathy and more complications. Neuropathy is nerve damage, which has caused my RLS. I mentioned retinopathy because l was reading a post on dry eyes, which in my case is a result of diabetes and high blood sugars. For a few yrs restless legs and "body" was debilitating and the worst feeling lve ever had. I cant use the word pain because thats not it. It's more like the unbearable discomfort you would experience from drowning. Unless you're one of us, this is not always understood and l was constantly asked by doctors how bad is the pain, especially with diabetic neuropathy, which has symptoms of tingling, foot pain, etc. But my neuropathy is literally a lot deeper. My damaged nerves are what causes the debilitating squirming and twisting in an attempt to get rid of the feelings in my legs and the rest of my body too. l saw a post once that said is there such a thing as" restless body"also, and reading further it described me. It's actually called the MS hug, (multiple sclerosis), where your body is squeezing and contracting like our legs. Its said to be one of the worst pains of MS. I do not have MS. The MS hug is damage to your central nervous system, where as diabetic neuropathy is usually the peripheral nervous system, (legs included). The best way found to treat this is with opioids . I have tried almost all of the meds talked about in this forum, and tried some walking, showering, etc. and the only relief I get now is from opioids. I have taken different narcotics for about 6 yrs, and l am not addicted. The doc switches from one to another to prevent needing a higher dose. I took morphine, fentinal, all the oxys and others. I dont like it but know that the alternative is worse. It doesnt effect my body as much any more so l can usually flip around on the bed but before these drugs l was flipping around on the floor desperately trying to get rid of the restless everything. Unfortunately with the drug addictions and overdoses, which is not me, all doctors had to decrease opiods to a standard amount for everyone and once again the legs are bad, like others described, in the morning, before bed, waking in middle of night and or an episode in the middle of the day. They're not as violent as before because l take oxycontin every 12 hrs and oxycodone for breakthrough pain. Since this is a lower dose l have to save and "budget" the pills in case l would have the worst episode.

Maybe some of you have an underlying cause, parkinsons, diabetes, ms or something easier to fix, and if the RLS is causing sleep loss, dreading to go to bed, and is debilitating, maybe opioids could help. The last thing l want to do is tell people to take drugs like that. As a teacher l knew 2 boys who overdosed and it's dangerous stuff. However its the only thing that has helped me, and my pain Management doctor carefully monitors me. Or a much better alternative is to try the non addictive drugs, and activities that have been posted.

[Hidden]

Thanks for sharing this. Opiates, it seems can help with RLS even in cases of primary RLS where there is no neuropathy or other underlying condition.

It sounds as if you an example of where it is working and you are avoiding any risks with the help of good medical supervision.

[Faithatthebeach in reply to Hidden]

Thank you for saying that, and l do have a great doc but he has to follow the newer laws and legal dosing including for chronic pain people. I take about half the dose of what l had been taking but l am so thankful that it at least takes the edge off and none of my kids have it, and its not fatal.

We must just be special! I dont know what paracetamol is, so lm going to look into it now. Thanks for sharing.

Stay safe and "still".😊🙏

[Hidden in reply to Faithatthebeach]

You may know paracetamol as acetaminophen. It's an everday over the counter painkiller. It's also helps with a fever.

It completely sold out here when coronavirus arrived.

[Madlegs1]

I often find that Oxycontin doesn't last the full 12 hrs. Sometimes,if I take a trigger, eg msg, I can potentiate the Oxy by taking some paracetamol. I find about 250 mg seems to get me over the hump.!

I hope you continue to have relative peace.

[Faithatthebeach in reply to Madlegs1]

Thank you, and you too. Oxycontin doesn't last 12 hrs and my dosage is half of what l was given and needed before new perscribing laws. Chronic pain patients have been "punished" because of those who became addicted, probably by not taking the opioids correctly. The doc tells me whats safe to take but if l chose to take it as truely needed, l run out before fillable again. So l suffer a lot, thinking if l take meds this time l wont have them for a worse attack. I do my best and balance health issues and ad bad as we know the rls can be, at least its me and not my kids, and l will deal.

I love your name madlegs😊🙏

[Faithatthebeach in reply to Madlegs1]

Thank you for saying that, and l do have a great doc but he has to follow the newer laws and legal dosing including for chronic pain people. I take about half the dose of what l had been taking but l am so thankful that it at least takes the edge off and none of my kids have it, and its not fatal.

We must just be special! I dont know what paracetamol is, so lm going to look into it now. Thanks for sharing.

Stay safe and "still".😊

[LotteM in reply to Faithatthebeach]

Faith, I assume you're in the US? Paracetamol is the generic name for the stuff in Tylenol. Maybe that brand name strikes a familiar chord?

[Faithatthebeach in reply to LotteM]

I am in the U.S and of course l know about tylenol , but didnt recognize the stuff inside. Thanks for clearing that up.

[Madlegs1 in reply to Faithatthebeach]

Acetaminophen in USA.

[bill54321]

I hope you asked your specialists for second opinions. It is acceptable and is not encouraging you to change. Medications that heal nerves are not pain pills. Medications can varied according to Physicians for RLS with Awakness Physical Jerks. They are not pain medication . Mild individual pain Prescriptions can be given for the discomforts involved. Most frequently some individual need nerve repair, RLS medication and pain suppliment. When any of these three become excessive, problems that a profession in Movement Neurology needs to address. Even more than one consult. I have read many stories and this seems to be the standard complaint. I am a retired Physical Therapist. I am Not an M.D. But I am knowledgeable. I believe I have stated this prudently. Ask yourself:::What am I accomplishing by taking my medication. Make sure within a short period that you talk pro-actively to your Prescribing Physician if the medication is doing what it suppose to. Keep in your medical loop but google and become familiar with the questions you should ask. Make sure you write the questions down. If you are diabetic, have seizures, have unusual jerks in the tongue, face or arms, what does this mean.?You may be referred for brain scans, emg, , endocronologist, Finnen (iron)test, brain barrier review, and others.

Going off on other self helps may give light for the need for more Professional studies, Things like apple cider vinager, flaxseed oil, Himalyan pink salt hydration, magnesium gels or suppliment, honey and garlic are all have good nutritional value and may help. But they all need to be listed in the medication chart at your movement neurologist or primary Physician who is bird dogging your records. Now a days, these records can be e-mailed to your next consultant. If you have been on forms of mariquan(sp) the next Doc should know. I guess what this amounts to is a complete documentation and follow up by trainner people. Natural treatments need to be part of your records, In many cases, medicare is mandatoring it.

[Faithatthebeach in reply to bill54321]

Thanks for all your valuable info, and l hope other diabetics will see your post, however lm a step ahead of you. l am 59 years old with type 1 diabetes, with the 30 past years of knowledge and experience. I was carb counting and limiting carbs before it was a way to eat or used for dieters. In the 1980s-1990-s, the recommended ways to eat were to avoid all fat and eat more carbs. The old food pyramid had about 2/3s carbs and starches. I am a type 1 brittle diabetic, which means regardless of my excellent eating practices, my blood sugar had a mind of its own, and it went high to low or low to high, etc. Next came Atkins and some others who were the pioneers in changing the way we eat by totally getting rid of carbs and eating all the fat and protein you wanted.. Not everyone bought into this though, and minimizing fat while eating more carbs, was still practiced. This lead to the protein phase, which is currently the best recommended way to eat, for health and to lose weight. Now eat more protein but not so much fat, and eat healthy carbs like fruits and vegetables. I think Michelle Obama was the one who changed the food pyramid from the past.

My son in law and son are physical therapist assistants now, and a lot had changed. For example the understanding neuropathy, damaged or dead nerves and RLS. Respectfully, lm not quite sure you are understanding neuropathy. There is nothing, not meds or exercise or tricks that can " cure" diabetic peripheral neuropathy, anymore than you can cure diabetes, only do what you can to be healthier to hopefully hold off complications. However, just like George Burns lived to be 100 while smoking cigarettes, even the perfect diabetic can develop complications. This kind is irreversible and not curable. Eating right and exercising can sometimes make you more tolerable to the symptoms of neuropathy, but only masking the symptoms. I have tried all meds and still take some now, from lyrica, gabbapentin, antidepressants and opioids. It sounds like you may have the same approach ss my son inlaw, that almost everything can be cured or made tolerant enough, through healthy eating and physical exercising. Unfortunately that is not always the case. When my neuropathy, rls and restless body started, l would be completely debilitated and unable to function. I dont say RLS is pain, because if you have it, you know that its like drowning which is not described as pain, but described as the worst imaginable feeling that exists. At my worst l would be on the floor flopping around like a fish, stretching and contracting and crying and screaming, thinking that death would be better, and lm not suicidal. l will do anything to not feel that way and thats why after trying every possible temporary remedy, l have been taking my opiods. My diabetes lead to extreme osteoporosis and lve had 2 knee relacement surguries and 2 broken wrist surgeries and acl and meniscus total replacement before the knees. That was 4 surgeries and torm and broken bones in less than 2 yrs. My point is l would prefer to do all of that all over again than suffer the torture from my neuropathy. I also had 5 natural childbirths and they were not half as bad as the neuropathy. I am counselor, psychologist, teacher and was under the impression that laying on the psychologist's sofa talking was the fix all and never should we need meds. Then l learned there are some things you cant fix. If you're diabetic we take insulin, if we have a serotonin issue we take the serotonin anti depressants, and if you have unbearable pain you take what you need. Also l do eat well and exercise. I am a fall risk, but not because lm "high" from opiates, just the opposite. Opiods dont get me high they stop my falling because they go to the nerves which control balance.

I dont think we should take drugs for every little thing, and they are not anything l would take for pleasure. Its like the drug knows to go to the nerves not make you high. My son inlaw is still very anti drugs but after seeing me, knows its a necessity.

Also l got at least 10 different opinions from other doctors over the years.

Once again thank you for responding and your knowledge. You obviously know a lot about your work. Im also retired and was put on ss disability, but miss working still after 5 yrs.

[Bftalbert]

I recognize a true RLS person when I hear them, being one myself for so long. I too have full body RLS. Your description, as well as your difficulty doing so, was spot on. I would agree, that opioids work well. However, have you tried caffeine? I know it sounds counterproductive, but I promise you it's not. The trick is to take in a very small amount. I usually suggest to people to take a quarter cup of coffee or a quarter tablet of a caffeine pill. If needed, you can take what I do, and that is a 1/2 a caffeine tablet. People ask me if I take it to go to sleep because they have insomnia. My answer is yes, absolutely.

[LotteM in reply to Bftalbert]

Hi bftalbert, what strength caffeine tablets do you have?

[Bftalbert in reply to LotteM]

200 mg. Take 1/4 to 1/2 tab. Start with 1/4

[LotteM in reply to Bftalbert]

Will do. Thanks.

[Faithatthebeach in reply to Bftalbert]

Thanks for advise. I have tried medicines with caffeine, but maybe its time to try again

[Eryl]

The title says "Other causes" but you haven't said what the primary causes are. In my view, all three are symptoms of a high carb diet. A high carb diet triggers a high release of insulin, and when the body reaches the limit of the a mount of insulin it can handle, that's when you get type2 diabetes. High insulin drives the cell's metabolism hard and causes inflammation. This inflammation makes the nerve receptors overly sensitive, which leads to rls. I strongly suspect that this inflammation is also contributing to the damage contributing to your retinopathy.

[Faithatthebeach in reply to Eryl]

Diabetes can attack any nerve or organ in your body.

Your description of the mechanics of diabetes is the perfect text book definition. However diabetes is not one size fits all and theres a "phenomenon " called brittle diabetes, which is when your body and insulin work differently than the text book, and can vary with each meal, while having the same variables like amount of carbs and exercise. Maybe you can look into this to increase your knowledge.

As for diabetic neuropathy, retinopathy, osteoporosis, hearing loss, heart, lungs, kidney, skin, etc complications, l must have not been clear in my explanation. High blood sugars over time are the cause of all complications including neuropathy, RLS and retinopathy. If lm understanding correctly, you are comparing or putting together rls with retinopathy which are unrelated. What they have in common is they are both complications of diabetes. Thanks for your reply.

[Faithatthebeach in reply to Eryl]

Also, l eat a very low carb diet

[Faithatthebeach in reply to Faithatthebeach]

Thanks for all the info. I spoke about carbs but cant find my post, so l hope im not replying redundantly to you.

As a diabetic lve been carb counting, decreasing carbs and like Atkins eliminating most of them, before low carb, higher protein became the trend, then the way of life it is today. I see how well it can work and l try to limit as much as l can. It just doesnt work for me as it should. I have brittle diabetes with a mind of its own and sometimes the same food will make me have high bl sugar one day, low blood sugar the next day and normal the next day, and with the same other variables, time of day, other foods with it etc. The other factor is that daily l have bouts of low blood sugars and the fix for low blood sugars is to eat more sugar.

It would make me happier than anything to be able to eat healthy lower carbs meals and stabilize my blood sugars.

Any other suggestions you might have are welcome and appreciated.

[Hidden]

You've had quite a few replies now, some of which aren't exactly accurate or encouraging.

If you do choose to take medication for your RLS then irrespective of the effectiveness of any alternative remedy anybody might suggest, then that's your perogative. Please don't be put off by dissenters.

It is unfortunate that you can't currently get an adequate prescription of an appropriate opiate as it is accepted by RLS experts that opiates are effective for RLS.

I can see it has helped you to get a partial prescription by claiming it's fir chronic pain. However, I'm not sure if it's recommended in the US, but I do know that in the UK it is recommended that opiates are NOT prescribed for chronic pain. Opiates are recommended for acute pain and pain in terminal disease only.

However, I also know that there are RLS specialists in the US that do recommend an opiate for RLS and will prescribe one. I note one member of this forum particularly obtained buprenorphine from a US specialist which she found very effective.

There are a couple of such doctors, unfortunately, I can't recall their names

I will try and track them down.

Later - you may find this post helpful

healthunlocked.com/rlsuk/po...

[Faithatthebeach in reply to Hidden]

Thank you very much for your support, thats a good feeling. I have chronic pain which includes RLS, but is not just the RLS, but is also pinched nerves, herniated discs, terrible stenosis, terrible osteoporosis which has caused me 4 broken bones, 4 surgeries, ACL replacement and knew knee replacements, all within last 2 yrs. The metal attached to the cadaver bone in my wrist is another source of chronic pain. I get some eye pain from retinopathy and a more. So l have been a true chronic pain patient for yrs. my doctors in the U.S accept and realize the benefits of opiates with most pain, including RLS. I dont have a partial prescription, l have the highest allowable perscription in my state, after the drug addicts and overdoses causes prescribing laws to change. 3 yrs ago l had a medium dosage of fentynal and then morphine, both around the clock. The only reason my scripts were lessened is because of new state guidelines for dosing, which provide the same max dosaging for all individuals, based on government guidelines not need.

As a responsible adult and counselor l am quite intune with the meds and scripts, and have never had a drug problem, therefor l will take opioids for the rest of my life if they dull the effects of my RLS and neuropathy. Thanks for looking for Docs names, although lm comfortable with my pain management doc of last 5 yrs. Hes treated me for each broken bone, and pain related ailment and neuropathy and RLS and knows l am not an addict so can prescribe me the max allowable by law.

Thanks again, l really appreciate your support.

[Hidden in reply to Faithatthebeach]

I'm sad to hear that you have so many difficulties but you appear quite knowledgeable about your conditions and seem to be on top of them.

There is one thing I note that might be of further help. It may not necessarily apply in your case, but usually SSRI antidepressants can make RLS worse.

In my case for example, my mild idiopathic RLS which I'd had for decades, quite quickly became severe following a course of an SSRI.

Since your RLS is secondary to your neuropathy, it might not be the same for you, but it's still possible.

I can appreciate that depression is a risk for you, but non-pharmaceutical measures might be better than SSRI or tricyclic antidepressants (which can also make RLS worse). If not, Wellbutrin is a "RLS safe" antidepressant.

[Faithatthebeach in reply to Hidden]

Thank you once again, you are very knowledgeable. Wellbutrin, Ive been there done that too. Its a catch 22 for me of which drug or condition is worse.

I have not been clinically depressed but had a lot of OCD issues. 20+ yrs ago, My diabetes doctor put me on a combination of wellbutrin and effexor, both SSRIs, to stabilize my mood. He though that an even keeled mood could possibly stop the up and down blood sugars. I increased by intervals in the beginning, but eventually stayed on max dose of each, 450mm, and unusually enough my body never needed to go up. I have heard from others too that these drugs can ramp up the RLS, but benefits of better blood sugars and no ocd, outweigh the risks. Without it l could get back to being ocd/ anxiety and then try to cope with the RLS. I had also tried others that were less likely to promote the rls. I then continued Wellbutrin, etc. To me if its not broken.

Once again, thanks for your responses. I appreciate your knowledge and intelligence. Maybe after a few more suggestions, we will get the magic one.

Im not sure of your ailments but hope you are as comfortable as can be