documenting changes

[Sinead12]

so I had been struggling with a flare up in my rls since starting HRT 2 months ago and although the estrogen may be the cause I want to document what’s going on to look back at. So the last 4 days it seems to be easing off but I can’t pinpoint why. Things iv realised : when I started HRT , I also started a new supplement regime including methylated b vitamins and magnesium, the hot weather was kicking in and I was drinking more water…. I stopped taking my b vitamins about 7 days ago when I heard things about b6 and nerve damage , I also ran out of magnesium 4 days ago . Most strangely I seen people talk about potassium so two nights before last I drank a glass of coconut water , for two nights running, I’ll be honest , I slept really good , my tracker scores were the best iv seen them in a year but during the day I felt unbalanced on my feet??? So last night I took nothing and tossed and turned all night but with only some restless leg. As anyone in the uk knows though in the ladt 3 days the temperatures have finally dropped so everything else could be crap and I’m solely getting relief from the drop in temps.? I’m not going to re order any supplements and keep my water uptake under control for a week or two and see if I continue to trend in a good way or whether I’m just being overly optimistic from a few nights better sleep

[Joolsg]

Did you ever get the full panel iron blood tests? That should be the starting point in your treatment.Iron pills every other night or an iv iron infusion can raise your serum ferritin above the required levels for RLS.

HRT can worsen RLS for some people. Magnesium and potassium can help some people.

Are you still on methadone? That is very helpful for RLS and you should try to stay on it and raise the dose if necessary, rather than add gabapentinoids.

[Sinead12 in reply to Joolsg]

I’m on 6ml of methadone currently and I’m hoping to get off that within the next month. I totally understand that this is foremost my biggest trigger ( although not this time) and that staying on an increased dose would definitely help but it’s just not something I’m willing to do . I contacted my doctors about the RLS being exacerbated by my HRT and wanting to have an iron panel done and they forwarded me to womens wellness clinic , so I may have to message again and not mention the HRT to try and get an iron panel . Either way I have started gentle iron at 80mg every other night but it’s still to early to notice anything less than 2 wks in. Something is definitely off in general tho as iv been a bit breathless too with very weak knees . I will msg my doctor about a blood test and try to ask for the specific iron tests but as I’m sure many are aware , getting your doctors to agree to things you’d like to try isn’t always straight forward .

[SueJohnson in reply to Sinead12]

Opioids can cause breathlessness.

Do come off the methadone slowly to avoid withdrawal effects.

What are you going to do then to control your RLS?

[Sinead12 in reply to SueJohnson]

The breathlessness isn’t from opiates unfortunately. Iv stopped all the supplements, at least for now , I’m going to try my doctors again requesting certain blood tests and not mention my HRT for now, asking for a full blood work but also to include all the iron tests ? Iron, serum ferritin, transferrin ? Also a vitamin and mineral along with some hormonal tests. I can only hope they permit it. As for general rls control , it’s definitely calming down for some reason , at least to the point I can get enough sleep . And I’ll keep my Gabapentine close by for when it’s bad. If they allow me to have the testing I may consider halfing my HRT dose to see if it gets rid of my rls altogether .

[SueJohnson]

You may have seen this but in case you haven't: Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

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, C, 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. Keep a food diary to see if any food make your RLS worse.

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

[Sinead12 in reply to SueJohnson]

Unfortunately there are some things on both lists iv taken for months that never triggerd my rls ( like caffeine and collagen) and then others that I was taking while having this most recent horrible flare , like b vitamins and magnesium . But I will list things I did during this flare

HRT

excessive leg work outs

Drank a lot of water

Methylated b vitamins

MSM

Magnesium glycinate

Vitamin c

Gentil iron

Vitamin d3 and k2

Ashwagandha

Hot weather

Protein shakes

Over eating

[SueJohnson in reply to Sinead12]

The only thing I see on that list that can make RLS worse is the HRT.

[Sinead12 in reply to SueJohnson]

I’m positive this is playing a huge role , I’m on a waiting list for a womens health appointment to look at some alternative to estradiol hemihydrate or to at least try a different brand to see if it helps , or to lower my dose or add in testosterone. Just try and mess around to see if I get any improvements. If It doesn’t improve and I start to become unable to deal with it I will add my Gabapentine on a more continuous basis , as unfortunately stopping HRT is not sn option

[Zenawarrior73]

hi Sinead I’m tracking everything to atm and interestingly I’ve found coconut water to help

I’m taking a variety of supplements and playing around with them and the timings inc

Am:

Magnesium malate, krill oil calcium

Plus D , multi, methylb12, turmeric, biotin, lions mane, msm.

4pm gentle iron plus vitamin c one night then ferrous sulphate plus vitamin c the next

Dinner around 7pm

9pm magnesium bisglycinate

I drink aloe Vera in the morning and an electrolyte and coconut water mid afternoon

I’ve cut out coffee and I’m cutting my HRT patches in half to only give me half the dose

I’m also on prescription meds (Pregabalin Topamax esomaprazole)

I’m also tracking my food to see if I can spot any triggers

Hope you start to see your pattern

[Sinead12 in reply to Zenawarrior73]

I wish I had of tracked more, I’d love to know when I had a specific bought 3 years ago so I could track if there just happening in summertime, I was taking a lot of supplements but to be sure iv knocked them all in the head , I’ll introduce them back in if my rls doesn’t get any better. Honestly I don’t think I’ll ever figure it out , the more I track , thr more I realise there doesn’t seem to be an external factor that I can pinpoint 😞

[Sinead12 in reply to Zenawarrior73]

did you find any real major difference when you halved your HRT dose? I know everyone is different but just out of interest?

[Zenawarrior73 in reply to Sinead12]

I do think cutting my patches in half has helped especially the second half of my cycle when my symptoms seem worse

I know this is as 2 nights ago I mistakenly whacked a full patch in and had a shocking night and morning after a few better nights so I whipped the patch off mid afternoon and the symptoms calmed down a little

Exercise too late in day also is a trigger I’m realising for me as is tight hip and glute and lower back muscles I’m better after I’ve seen my sports massage therapist (I had hip surgery earlier this year so still seeing a physio this is how mine started)

[Munroist]

I think your approach is good, it’s difficult to keep track of everything and even then there may be something you haven’t thought of which causes the RLS to flare up. Personally I felt good hydration made a positive difference, I’ve never conclusively identified any problematic foodstuffs and the most reliable connection is exercise. If I exercise hard I sleep worse and similarly if I do nothing I also get more restless. The sweet spot is staying active during the day and about 10k steps of reasonably vigorous walking.

[Sinead12]

I have just looked at the date I was prescribed Gabapentin and it was June 2023 which is summer , I’m going to try and contact my drug worker and see if she has records for when I came to her about my rls in 2022. Not that them all being in summer would be definitive but it would be interesting 🤨 to note