An Observation worth mentioning

[Reb0013]

Hi all, writing from Florida. I've had RLS badly for past 2 yrs. in both legs, occasionally in ankles and back of shoulders (probably mildly previous to that but didn't understand that was what it was nor did it keep me awake like it has the past 2 yrs. I initially went on Ropenerole but then after much research much of which I credit this forum for prompting such, I weaned myself off and began alternative treatments. I have managed to control it by 1) getting an iron infusion, my Ferritin was 13. 2) curing an overgrown unknown Helicobactor Pylori gut infection 3) being diagnosed w sleep apnea and now wearing a sleep mouth device to hold my lower jaw forward so my tongue doesn't drop back and obstruct airway and 4) modifying my diet to more of a FODMAP diet with lower complex carbs. Lastly, a hot bath with epsom salt calms my muscles before bed.

The point here is this... I see a connection with each of these treatments - I did one treatment at a time with each treatment resulting in substantial improvement. My observation is this and not sure how to interpret it... I recently had skin cancer on the front of my leg shin which required surgery to remove it and stitches with 14 staples to close the incision. (that's the Florida sun, golf and boating...). The RL symptoms all came back with a vengence for 7 nights following the surgical removal... but ONLY IN THAT LEG. Last night was the first night I had no restless legs so finally got 7 hrs sleep. Hallelujah! So in conclusion, I can only assume the surgery on that one leg caused the restless leg symptoms??

[MartinCo]

Hi from the UK I've had restless leg syndrome for over two years and at the beginning of was (as you know)awful then there's the long and tiresome journey of waiting too see a neurologist etc etc when I was prescribed ropinerole and it made a world of difference calming my legs down and giving me some relief,now I've got too still cope with my chronic pain and nerve pain ain't life great!

[SueJohnson in reply to MartinCo]

Have you thought about coming off ropinirole and switching to gabapentin since ropinirole is no longer the first-line treatment for RLS? Up to 70% of patients will suffer from augmentation which believe me you don't want. It used to be the first-line treatment which is why so many doctors prescribed it but they are not up to date on the current treatment recommendations. 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 as yours obviously isn't at

Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. Most of the side effects of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

[MartinCo in reply to SueJohnson]

Thanks

[SueJohnson]

The surgery probably did not cause your symptoms but the medicines or anesthesia you were given may have. You need to have your ferritin checked - see my reply to MartinCo. Also see what I have written on gabapentin which is now the first line treatment for RLS and my link to the Mayo Clinic Updated Algorithm on RLS.

[Reb0013 in reply to SueJohnson]

I did not have any anesthesia; it was a local injection. Secondly, my ferritin level is perfectly normal now and has been for the past 12 months since the iron infusion. I am not on medication and do not wish to be on gabapentin; there are to many side effects. My observation and thought is that the incision area upset the nerves; inflamed nerves in that leg probably caused the restless legs for past 7 days. The site is healing and the restless legs are going back to being manageable. Thks.

[SueJohnson in reply to Reb0013]

I'm glad everything is going back to being manageable. If it gets worse in the future you might want to consider gabapentin. Many people have no side effects and or only mild ones that are more than worth it for the relief from RLS. And if one does have side effects that are worse it is easy to come off it with no withdrawal symptoms at all if one takes it slowly unlike ropinirole.

[Joolsg]

There are quite a few reports of leg surgery or trauma triggering RLS. I think the surgery on that leg was the trigger and I'm glad it's now settled down.It's good to hear that the iron infusion helped as well.

Just wish it was standard first line treatment for all RLS patients. So many would be helped and would not need meds.

[TeddiJ]

Thank you for your post...all great info and so interesting to me as I recently had 2 biopsies on my shin and both were basal cell.

[AnotherRLScase]

Interesting. My RL is mostly under control at the moment, but one thing that used to trigger it was if my husband just stroked my leg. Totally normal touching, but just that stimulation would cause the nerves to start crawling. If normal stimulation like that could set it off, it wouldn't be at all surprising if leg surgery could trigger it as well. Glad it seems to be going away for you again!

[PoorRichard]

Another thought regarding the impact of your surgery is the resulting inflammation during the healing process. In my journey I have often noticed a correlation between inflammation and RLS. For example, my systemic response to the mRNA Covid vaccine was a temporary uptick in my RLS. Similar response to Shingrix (shingles vaccine). Healing and the inflammatory response often generate my RLS, which is also why I have adopted a low inflammation diet (basically eliminate refined carbs). Your inflammation was localized to the surgical leg, I suppose. Perhaps that generated the localized RLS. Food for thought.

[Seaux]

Doctors who specialize in RLS have known for quite some time that sometimes surgery can exacerbate RLS but they don't know why. It happened to me after general anesthesia for a total knee replacement. I finally got it back under control by adhering to foods that are low in histamine.??? who knows why? Hope this will help you!!

[Reb0013 in reply to Seaux]

Yes, thk you for your reply. I was aware that general anesthesia can exacerbate RLS; but as mentioned in another reply to someone else, I did not have anesthesia of any kind.. just a local in the leg. I imagine just the excision and stables/stitches alone irritated the area nerves enough to bring it on. Just odd to me that I only have it in the one surgical leg since the surgery. Same as you trying to tighten up the food diet again to help calm it down.