WHAT TO DO,WHAT TO DO ?

[sweetiepye]

My RLS is acting up again and my doctor is frustrated with me. I would look for another but I don't want to start the whole process of breaking in a new person. It takes so long for them to get to know you and vice versa. I am going through blood tests and here are some numbers for you to look at. My ferritin is 555.3 ng/ml...Iron level 62 ug/dl...Iron binding 291 and trans ferrin saturation 21% My liver and all organs are fine and the test for hemochromatsis was negative. Any thoughts ? Pam

[ziggypiggy]

Some others here are better suited to interpret your numbers. I'm curious what your doctor is frustrated about? You're the one frustrated and suffering.

[sweetiepye in reply to ziggypiggy]

I know...I wish she could spend a couple of hours in my shoes when I'm really having RLS to the max . She has no idea. Well none of them do really. She doesn't like to be questioned and last month I increased my med for two days to see if it would help...she went nuts.I had to promise to never ever do that again.

[Madlegs1 in reply to sweetiepye]

Have you been keeping a food diary?It certainly sounds like something is triggering your new state.

Look especially at what may be new in your diet.

Some ice creams can really be dynamite.

Good luck.

[sweetiepye in reply to Madlegs1]

I think you might be on to something . Normally I don't eat ice cream or dairy with sugar in it, but recently I've been going to the ice cream stand with my husband. It being summer and I felt like indulging myself. Time for a food diary I think.The one thing I am worried about is the high numbers in ferritin and low numbers of trans ferrin saturation . I have had the test but not had the follow up with the hemotoglist. Have to wait.

[DreamerTED in reply to Madlegs1]

Please enlighten me on the "Some ice creams can really be dynamite." I've never heard this. We had ice cream the past two nights and my husband really didn't sleep all night.

[Madlegs1 in reply to DreamerTED]

I can only speak from personal experience, and supported by many others on this site, that some ice creams can set off the Heeby Jeebies full belt .I haven't really researched the various ingredients, but I imagine there are preservatives and various lovely flavourings and enhancers in the mix .

It is difficult, because some have no effect, and others are absolute dynamite - ( as your husband has discovered 🤔)

So -- there is a whole doctorate research project going for anyone with time on their hands!😵.

Meanwhile- I avoid ice cream, except for when I don't.!🙀

Good luck.

[ziggypiggy in reply to sweetiepye]

What med are you on if that's ok to ask?

[Hidden]

Since your ferritin is apparently quite high and yet your TSAT (21%) is quite low, this does suggest that your ferritin level is not a good indicator of your brain iron levels. Heamochromatosis would only be indicated by a TSAT more than 45%

The high ferritin may be a sign of inflammation.

Madlegs may be right in that it appears something may be triggering the worsening symptoms.

Are you still taking pregabalin? What meds are you taking for your anxiety/depression?

[sweetiepye in reply to Hidden]

Pregablin 150 mg.1 in am and 2 in pmIam weening off of Cymbalta very slowly and NOW AT 20 MG A DAY, I've been on this for yrs. and haven't decreased since April.

[Joolsg in reply to sweetiepye]

Cymbalta worsens RLS so hopefully, once you've weened off it, the RLS will disappear or settle.Pregabalin dose of 300mg is an acceptable dose for RLS so no idea why your GP is getting angry. It's so annoying that GPs do this. I understand why you are frustrated.

[Paganpatrick]

Looks like you’ve worked out a sugar/ice cream link already! I must start a food diary too. If not rude, may I ask why you stopped decreasing your Cymbalta? I totally agree with tapering slowly but it seems you’ve stopped the process. I’m afraid I don’t know much about iron/ferritin levels apart from I take a supplement. Fortunately there are those more knowledgable here who can help you.

[sweetiepye in reply to Paganpatrick]

Firstly my doctor is guiding me , and he makes the decisions about when and how much to decrease . I haven't stopped. I'm at 20 mg until I see the doctor again. Cymbalta isn't good for RLS. it was prescribed by a former doctor. I have been on it for about 15 years and I think it's more than I need. My doctor agreed with me. I don't like to think where I would be with RLS if it weren't for the members of this forum . Locked up somewhere I imagine.

[Paganpatrick]

I’m sorry if I gave offence it was not my intention. I was just speaking of personal experience of tapering off drugs especially duluxotine which was worse than any of the opiates I’ve come off. For me I had to carry on tapering off duluxotine slowly by myself as GP wanted me to stay on it. I’m not suggesting you do this or ignore your Drs advice. It was just how I had to do it. Slowly. Even down to opening capsules and tipping out half the little balls! I’m afraid I don’t trust most doctors anymore and consider them advisors. I stick close to the Hospital Multidisciplinary Pain Team and have very little to do with new GP, my previous one of 25 years having selfishly retired to the sticks! Lol. I really don’t have the time, patience or inclination to break in the new chap who’s worked in London, Los Angeles and knows how to precisely label every ailment known to mankind without even meeting the patient! Lol

[sweetiepye in reply to Paganpatrick]

If I sound cranky it's due to lack of sleep , not to any offence you have given. I get 2 to 4 hours on a good night and I have 3 to 4 good nights a week. I had a very difficult time going off Ropinirole last March . I read going off duloxetine can be awful . My doctor said we can go as slow as i need to. So far it's been okay , but as you know it gets harder as you get closer to the end.. I have the same opinion and distrust of doctors as you.I think I may have met the chap you mention.lol

[SueJohnson]

Cymbalta definitely made my restless legs worse. Glad you are getting off it. I'm surprised it was ever prescribed for you.

[Paganpatrick]

I know what you mean about sleep, two nights without at the moment. Usually get 2 to3 hours on a good night too. I used to crash every now and then and sleep around the clock, just doesn’t happen anymore. Worst was five nights in a row awake. I thought I was going mad. The military use 24 hours of sleep deprevation to soften up detainees, light weights!

[sweetiepye in reply to Paganpatrick]

You make me laugh, thanks.

[wantokporo]

On the ice cream issue: for me it is the emulsifiers (the stuff they put in to make it stick together), as it is possible to find relatively lower sugar ice creams. More generally I have to avoid all of the various chemicals they put in prepared foods...so the diet that works better for me is mostly whole foods. Losing ice cream was one of the biggest food losses for me.

[Paganpatrick in reply to wantokporo]

My son and I make our own ice cream really easily but it does still have sugar in it. Whatever fruit we have to hand chopped up or sometimes peanut butter or Nutella, double cream and icing sugar. Mix it all up and freeze! It’s great when you get marked down ripe fruit and use straight away makes a cheap, healthy-ish treat! Lol and very few ingredients.

[sweetiepye in reply to Paganpatrick]

Now that sounds really good and good for you.

[Paganpatrick]

Good! That’s made my day making you laugh! It’s the best medicine there I’d by far!🥰

[rchobby]

Hi Sweetiepye, recent posts have pointed out to checking your diet. My husband had severe RLS on opiods and has almost eradicated the horrific symptoms by eating an Oxalate free (as much as possible) diet.

[sweetiepye in reply to rchobby]

Thank you for sharing. I hadn't heard of oxalates until a couple of days ago. What does he actually eat ?

[rchobby]

Oxalates are found in vegetables and grains so he eats a mainly banting diet but absolutely no processed meats. By googling you will find lists of oxalate containing foods but also, read the next post below. The author notnowdad has written an excellent article that should help you far better than I can. Good luck in your research.

[sweetiepye in reply to rchobby]

What is a banting diet ?

[rchobby in reply to sweetiepye]

Sorry we live in South Africa and may have different names for diets. Mainly it is a low carb high fat diet. We don't go with the whole high fat bit but we mainly stick to fresh only chicken and fish (ugh), eggs with occasional beef or pork. The only carb we eat is white basmati rice and the few low oxalate vegetables and fruits allowed. you could also check the rls.org.us website where you will find a list of rls triggers - ice cream, antihistamines, all anti-depressants except trazadone, any processed meats and foods containing phosphates. you can try all the meds ever mentioned for RLS but if you continue to eat whatever you like you won't beat the condition. 15 years of trial and error have proved this and we have only had peaceful nights over the past year after having so much covid lockdown time to research. When I say we, my husband has the condition and I do the research (while he used to pace!!)

[sweetiepye in reply to rchobby]

Thank you so much. You've given me a lot of useful information . I haven't paid much attention to diet and my doctors have never mentioned it. It sounds like an easy diet to follow and sensible. I'm glad your husband has found relief at last. RLS is a beast.

[spencertroy222]

Try one single dose of gabapentin 3 x 300mg as soon as it starts. Does the trick for me and j get rls bad.