54 years Dealing with RLS

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Robin_Eiland
Posts: 3
Joined: Tue Mar 10, 2020 9:53 pm

54 years Dealing with RLS

Post by Robin_Eiland »

Hello Everyone....

I am a 54 year survivor of RLS/PLMD..... This started at the age of 9, when I remember having horrible pain and leg movement. I think the response from most people in my life was , "Deal with it, it's just growing pains". Fortunately for me, my bedroom was designed with paneling for the walls; holding the paneling in place were these beams of wood where I could place my legs. So I would stretch them out and constrict them against the wood. This seemed to be the only way for me to get sleep, because they just would never relax; at night there was a great deal of pain and movement. I would describe the pain as cramping in the large muscles. It was horrible to deal with, and some nights I would either cry or try to sing myself to sleep to get my mind off the pain.
I guess you could call me a tomboy, or better yet that was how I was described by my four siblings, a sister and 3 boys. Dolls and playing house did not interest me in the least. I wanted to play with the boys; baseball, basketball, football. Then I got hooked on tennis. All of these sports I worked hard to be better than the boys that were on my team, but my secret goal was to best my brothers. Because these activities were exhausting on the muscles, finding peace at night was virtually impossible. From the ages 12 to 20 I found stretching and roaming the house at night was one of the best ways for me to grab 4-5 hours of sleep. My diet was well balanced mainly because my mother, sister and I were the cooks, while the boys and my dad worked the yard and the outdoor projects. I tried doing as much as I could to take my mind off the fact that my legs never stopped moving or cramping.

Though tennis was my love, I was recruited to be on a local college girls basketball team and softball team. The college I chose did not have a girls tennis program. My college was interrupted because I became a young mom at 19. This is when the pain in my legs seems to accelerate in movement and pain and some days I couldn't get my arms to stop from moving and spasming. Labor was the worst. The nurses and doctor just kept telling me that the birthing of a baby brought severe leg cramping, so they would suggest a warm bath and a glass of wine. I did try this but still the pain and movement became more aggressive. In my 30s, 40s and 50s, I was a professional tennis coach and player, and this level of exertion only made the legs worse.

Fast forward, and in 2006, my primary care doctor diagnosed me with RLS, and prescribed Requip/Ropinerole, which had recently been approved by the FDA as treatment for RLS. It was a lifesaver, and for the first time, I was able to have a near normal life. Then the years of tennis took their toll, and over the next 10 years, I had 3 back surgeries, 2 discectomies, bad arthritis with two full knee replacements, a hysterectomy, and a severe gall bladder infection and removal, and a few other surgeries as well. During this time, my leg cramping and movement returned worse than ever, and seemed to be more aggressive after each surgery. My doctors kept upping the Ropinerole dosage to compensate. My Neurologist asked for a muscle biopsy in 2012, which revealed a suspected metabolic myopathy. Many years of testing have failed to isolate exactly what that is, and it appears to be rare and complex. DNA sequencing revealed more abnormalities related to muscle metabolism, but it is not clear what the abnormalities mean.

As the years went on, and the pain from the muscles continued to come back stronger, we added Gabapentin, and then Hydrocodone to my daily "cocktail" of drugs to control my symptoms. Even with all these there were times when I thought death would be better than the unrelenting pain and discomfort. Everyone thought I was a druggie. My sister wanted me to see a psychologist and go to drug rehab... I kept telling her I didn't need that I just needed someone to help me with the pain. We tried alternative therapies like acupuncture and dronabinol, and electric stimulation, and nothing helped. I do use mediation and tools like distracting the mind with mental games and music. Even a pain management specialist said that I was on the right meds and I shouldn't worry about it. My husband then got serious. At the age of 60, there seemed to be no end to the pain and movement. My husband was using all of the force in his body to try and massage the horrible knots in the upper muscles of my legs, he would work up a sweat and not get one nodule to release. So constant roaming and pain and leg movement. Flying scared me. Long car rides scared me, Going to concerts I would have to leave, or in movies I couldn't sit still. The pain and movement was overwhelming me. In my early 60s, I was still on 2-3mg of Ropinerole, 10-20mg of Hydrocodone, 2400 mg of Gabapintin, 50mg of Nortiptylene. This helped but by afternoon and into the night the leg pain just wouldn't go away, and the arms were getting more and more affected as well.

Finally, last year we located a doctor who specialized in RLS, and after meeting with him, he determined that after my 14 years on Ropinerole, I had classic augmentation from that drug, and I had to get completely off it, or it would just continue to get worse as it had been doing, and could lead to permanent damage. That then began an excruciating period of tapering off the Ropinerole over several months, and replacing the Hydrocodone with Methadone, which I just completed this January. So now I am trying to live with my new reality, which has better control of the muscle movements, but the deep pain and weakening of the legs still remains, and now there is some wobbliness when I walk; we continue to try to understand what is causing these issues, or better yet my husband is... I am just exhausted with all of it!

I have been tested, picked, prodded, told I was a druggie, crazy, gone mad with pain, depressed, and been told I don't know what I am talking about. It is all in my head. Time and time again the answers weren't clear and the medications seemed to climb, with no results. So I owe my husband so much has he has been on this journey with me. My kids are some comfort but even they are too busy in their own lives to really understand. It's possible that my Granddaughter might be going through what I did at an early age and i would feel horrible, if she is afflicted with this debilitating pain. My daughters have their struggles too. One has Hyper-Thyroid disease and my other daughter is dealing with Raynaud syndrome.. My Sons legs are constantly moving but he doesn't complain yet. I think all of my family suffers from Aepna as well. I hope your foundation is the shining light for me. You really peak to much of what I have experienced.
I apologize for the long introduction, but I must admit this is healing for me to finally share with people who may understand. Forgive me for being long winded. I promise going forward I will be short and hopefully full of positive results. Robin

Rustsmith
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Re: 54 years Dealing with RLS

Post by Rustsmith »

Robin, welcome to the discussion board. I wish that I could say that your story is unusual, but unfortunately it is one that many of us can relate to (except for the professional tennis player part!!).

It is great that you finally found a doctor who "gets it" when it comes to treating both augmentation and severe RLS. That is most difficult part for many of us.

There are two things that you did not touch on, one type of treatment that you did not touch on is marijuana. If you live in a state where it is legal, many of us have found that it can be very helpful, especially when it comes to sleep. Some vape and others use tinctures or edible products, but the trick is that it is the THC that helps with sleep. The second topic is that of iron. I would assume that since you saw a specialist that understands augmentation that you have had your iron levels tested. Many (but not all) have shown great improvement with increased iron, especially those who have access to iron IV treatments.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: 54 years Dealing with RLS

Post by stjohnh »

Robin, sounds like things have improved with the methadone. I agree with Steve, get iron infusions if you qualify. You really haven't said what your current status is: How much problem do you have with urge-to-move (jumpy legs when you lie down)? How much trouble do you have sleeping?

Marijuana (THC, not CBD) seems to be one of the best drugs available for people with severe RLS to help with sleep.

The only other person that posts regularly on this board that has had lifelong RLS that I can remember is a young German man who has had severe RLS for many years, recently managed to get THC and it has really improved his life. http://bb.rls.org/viewtopic.php?f=4&t=1 ... is#p101001
Blessings,
Holland

ViewsAskew
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Re: 54 years Dealing with RLS

Post by ViewsAskew »

Hugs to you, Robin. Thank you for sharing. So much power in our stories - the sharing of them for the teller, and hearing what is in them for the reader.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Location: Northwest Territories, Canada

Re: 54 years Dealing with RLS

Post by badnights »

Hi Robin. Welcome to the community here. I like your "long-winded" intro - I feel like I know you a bit now.

You've had an exceptionally bad case of WED/RLS all your life - and if I'm not mistaken, there's something else going on as well. I'm glad you found a specialist who knew enough to get you off the ropinirole. It will take a few years to stabilize, during which you can look forward to ongoing gradual improvement, if my guess is any good.

In the meantime,learn all you can about iron infusions for WED/RLS (your specialist should know but you must learn as well, in order to have the best control over your treatment). There is some evidence that vitamin D can help, too. Anecdotally, for some people magnesium is helpful.

Another thing you can do is think about changing your diet. There is no hard evidence for this, but a number of us have been able to reduce the dose of our medication or otherwise have been helped by changes in diet. There have been many diets that people espouse, but the commonalities in all the diets seem to be:
restrict or eliminate added sugars, packaged foods with complex ingredient lists, heavily processed foods;
for many of us, eliminate grains/gluten (+- dairy);
reduce easily digested carbohydrates, replacing those calories with healthy fats (coconut oil, avocados, extra virgin olive oil); and
eat whole foods, including a wide selection of vegetables daily (to get all the micronutrients you need for your cellular metabolism to fix whatever is wrong).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Robin_Eiland
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Joined: Tue Mar 10, 2020 9:53 pm

Re: 54 years Dealing with RLS

Post by Robin_Eiland »

HI Everybody,

Thank you so much for all of your advise.. I am on a heavy infusion of Iron as well. Unfortunately the Marijuana did not sit well with me.. I was passing out at odd times over the course of the day.. So we have fiddled with Diet... that seems to be helping... Fresh greens (not Lettuce) but cooked spinach, green beans , Celery , Broccoli, Quinoa, with lemon juice and herbs... Its very yummy.
I also have being some things like cinnamon, Growing my own tomatoes and squash. Yogurt with fresh fruit,,,, NO sugars.. I eliminated that when they took the gall bladder. But Avocados are definitely a good choice for me.
The other things I have been experimenting with is organic beans, kidney and black beans... this has been a real good way to get some protein without weight gain.. Wax beans and squash.... So I will keep experimenting and thank you all for your warm welcomes'.. It really means a lot. I feel like I have people, a team.

Many thanks for all of the advice new attitude is dawning.
Robin

badnights
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Re: 54 years Dealing with RLS

Post by badnights »

So I will keep experimenting and thank you all for your warm welcomes'.. It really means a lot. I feel like I have people, a team.
Your diet experiments are perfect! I hope it makes a noticeable difference in your life. Be patient, the improvements are gradual over months.
And yes, you've got a team here. The people on this board are wonderful. They are very supportive. I couldn't have kept on going without this group. Some of the people change, but the supportiveness stays the same.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Frunobulax
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Re: 54 years Dealing with RLS

Post by Frunobulax »

Robin_Eiland wrote:So we have fiddled with Diet... that seems to be helping... Fresh greens (not Lettuce) but cooked spinach, green beans , Celery , Broccoli, Quinoa, with lemon juice and herbs... Its very yummy.
So much can be done with diet. Paleo, Wahl's, Atkins, all these diets can help, they are fairly similar and differ only in nuances. These 3 rules summarize my approach to my diet:
  1. Real food.
    No processed food, nothing that keeps for months, just get fresh ingredients and cook yourself. As a rule of thumb, good ingredients are fresh but can spoil quickly (within weeks). (Freezing is the only way to preserve them for a longer time.)
  2. Avoid anything that has a label with more than 5 ingredients.
    Chances are that it contains preservatives, emulsifiers, artificial flavors, added sugar and other crap. (There are a few exceptions.)
  3. Limit carbs, especially sugar.
    This is the controversial part, I have discussed it here http://bb.rls.org/viewtopic.php?f=20&t=10588#p99988. But it works for me. Less controversial is to avoid all added sugars instead of all carbs.

I also limit oxalates (http://bb.rls.org/viewtopic.php?f=20&t=9571#p83780) and lectins. (On your list, spinach would be a no-go for me.) And I avoid all omega-6 fats. But then, we're all different and for you the best approach could be doing exactly the opposite of what I'm doing :)

Robin_Eiland
Posts: 3
Joined: Tue Mar 10, 2020 9:53 pm

Re: 54 years Dealing with RLS

Post by Robin_Eiland »

Frunobulax,
Thank you for these suggestions, I already am practicing #1 and 3, of your suggested items. All of you have been very helpful and things are beginning to turn around. I am not have as many severe episodes as I was experiencing, my severe pain is always under the surface but not acting up every day, I may get the pain and severe leg and arm spasms 3 out of the 7 days. This is great improvement. I will work on number 2 although I very rarely open a can for any thing other than black beans. But will heed your advise.
Again thank you to all; you have been amazing. I have been reading a lot not commenting but really reading and adding and taking away elements as it fits my level of the disease.

yawny
Posts: 264
Joined: Sun Nov 08, 2015 4:20 pm

Re: 54 years Dealing with RLS

Post by yawny »

Robin, I would add to the diet suggestions to consider whether you have a sensitivity to histamine. It’s a growing diagnosis. You can eat only real, fresh food and still get sick from it if you have histamine sensitivity. I noticed it in myself after eating a salad and my legs went even crazier that night than usual. I figured out it was the vinegar. But it still took me a few years to realize it was all high histamine foods and during that time I was eating large amounts of tomatoes, spinach, green beans, lemon, wheat, etc. When I lowered the amounts, my nighttime symptoms got much better. You don’t necessarily have to cut out all histamine foods, just figure out how much you can tolerate. My point is that fresh food can cause problems too and some people here have discovered they have to be careful with histamine, oxalate, lectins, etc. Also, I can’t tolerate the THC in marijuana, so I age marijuana until the THC converts to CBN. CBN is like nature’s xanax and it helps me sleep and not notice my movements just like the others here that use marijuana with THC. If you don’t want to create it yourself, you can sometimes find CBN products at marijuana dispensaries. Best to you!

BarryO
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Re: 54 years Dealing with RLS

Post by BarryO »

I can relate to your story. After decades of this, dozens of generalist and specialist doctors, and dozens of different prescription meds, I too finally found a doctor that really understands RLS. I am currently taking one Pregabalin early evening (regular gabapentin didn't do much, and worsened my PLMD), then 10mg of Methadone mid-evening, then a light sleep aid late evening when I want to fall asleep. The combination of Pregabalin and Methadone has made a world of difference. The improved quantity/quality of sleep itself has helped my RLS symptoms, and now I'm able to skip the evening Rx from time to time.

In addition to the good thoughts provided here, I might also suggest a home TENS unit. It don't use it when my legs are already bad - I just can't focus long enough to set it up - but doing it on a nightly basis, earlier in the evening, made a difference. It was only about $30 from Amazon; just called TENS 7000. They key is to place the pairs of patches such that the current flows through the most irritating part of your muscles when turned on. The other key is to turn it up far enough to really get a massage from it. At first I only turned it up until it felt like pins poking in me. Then I tried going past that. I can actually see my muscles contort just as if my spouse was doing a really good massage. But boy it feels good. I do both legs at once, for about 15 minutes, for a few nights in a row. The benefits seem to accrue, and ease the symptoms for the following few days. Not a permanent solution, but keeps you in the game when you're just feeling fed up with it all.

Sending some good mojo your way. ;O)

badnights
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Re: 54 years Dealing with RLS - aside to yawny

Post by badnights »

@yawny - what happens when you take THC without aging it?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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