Trying to push through the pain

[Nlthomp]

I take comfort in reading these posts, although I wish that none of us had to deal with RLS. I just flew from Raleigh to NYC to pet sit my grandpups. I was in a panic that RLS was going to kick in on the flight, so I had two glasses of wine. When I got to my kids apartment I was so relieved, I had another two glasses of wine. I think my RLS is turning me into an alcoholic. It seems anything is better than dealing with this torture. I brought ropinirole with me and clonazepam. My plan is to knock myself out with clonazepam if it’s 4am and my legs are driving me insane. Keeping my fingers crossed that I enjoy this visit without RLS ruining everything. Thanks so much to all of you in the same position. God bless.

[RoadRunner44]

Life is so hard at times. Yes, I know the world is in an awful state and people are suffering. Sometimes , however, we feel so guilty regarding our Restless legs and the effect it has on our lives. Unfortunately its not obvious to others how we are suffering. We can understand the difficulties of a disabled person as it can be seen. But with our problem it is not something that is seen by others but in a way we are disabled too. Lack of sleep family responsibilities all have to be dealt with. Then, having to to take so many different pills to try to help to get some relief. It seems to be a no win situation at times. But yes, being able to share our feelings with others in a similar position does help. Try to enjoy your stay and let's have hope that a cure will be found in the not so distant future. Best wishes, Chrys

[Hidden in reply to RoadRunner44]

Yes I always think that too, that our disability goes unseen, therefore ignored or belittled. It’s so wrong but we keep plodding or in my case jumping along!

[Nlthomp in reply to Hidden]

Just having support means everything. Thank you CLL!

[Nlthomp in reply to RoadRunner44]

Thank you so much, Chrys

[Parminter in reply to RoadRunner44]

I think that at a certain stage of severity RLS is most certainly a disability.

It adversely effects every area of life and it never stops, That is a definition of disability.

[Nlthomp in reply to Parminter]

I totally agree with you, Parminter. I’m not there yet, just going through a bad flare up. I hope your RLS isn’t completely debilitating.

[Arkangel in reply to RoadRunner44]

I have RLS, ME/CFS and COPD - a triple whammy! You can be assured, that the odd occasion when I am able to put my head outside the front door, a neighbour is sure to tell me how well I look!! Fortunately I have an understanding partner.

[Nlthomp in reply to Arkangel]

So sorry to hear that. Best of luck to you!

[Hidden]

My sympathy that you have to suffer RLS and understand it can have such a significant impact on our lives.

It really pays to be as knowledgeable as we can about this disease so we can do things which help the symptoms and avoid things which make them worse.

I do envy you that you can drink alcohol so apparently easily. I love a glass of wine and make my own from.fruits I grow myself. Unfortunately, alcohol.is a known RLS trigger and these days, whenever I indulge, I suffer.

[Nlthomp in reply to Hidden]

So sorry you can’t enjoy a glass of your homemade wine. It sounds delicious. My RLS is very cyclic. Although alcohol is a know trigger, it doesn’t affect my RLS. I seem to either have it full force for months, but am lucky enough to have periods when it doesn’t bother me. Funny thing is I eat the same food, drink the same wine and live the same life. I have no indication of when it will come or go. It seems like many people on this forum have it so much worse. That’s so sad and I feel for each and every one of you. 😢

[JakeRLS in reply to Nlthomp]

It's a fickle condition to be sure. Alcohol was a major trigger to the point where I mostly gave it up. . But, I noticed within the last couple months, that's changed and sometimes a glass or two (wine) helps me get to sleep. Very weird and very very welcome! Good luck.

[Nlthomp in reply to JakeRLS]

So nice to hear you can relax with a glass of wine! You can see I also enjoy my wine 😋 Best of luck to you!

[JakeRLS in reply to Nlthomp]

Thank you, the same to you

[Parminter in reply to Hidden]

Wow! The best wine I have ever tasted was an astonishing blueberry wine from an English monastery. Every sip, from first to last, revealed new subtleties - I shall never forget it.

[Nlthomp in reply to Parminter]

That sounds amazing! Are you still able to have a glass of wine every now and then?

[Parminter in reply to Nlthomp]

A half glass very occasionally. But now I will get a headache before I get any RLS symptoms - I'm not sure if that is good or bad!

[Hidden in reply to Parminter]

I've no intention of becoming a monk!

[Parminter in reply to Hidden]

Pity about that. I believe they can knock back quite a lot of hooch, as well as making it.

[Hidden in reply to Parminter]

My favourite at the moment is Apothic Inferno from Sainsburys, just perfect if you love the taste of a very fruity red wine and Bourbon whisky. Honestly it's just fab. I will have a glass despite my RLS because you just have to say "stuff it" occasionally. It's well worth the sleepless night, after all that's gonna happen anyhow, so might as well go down smiling I reckon.

😁👱‍♀️

[Nlthomp in reply to Hidden]

😂😂 I really enjoy a full-bodied Malbec, but what you’re describing is off the charts. I agree... we have to live the hand we’re dealt 👍🏼

[Hidden in reply to Nlthomp]

Honestly it's lush, or is it me that's the lush 🤔 either way, just try it if you can. I am refusing to give up my glass of red because of RLS, it's because of that I need it more 😋

[Nlthomp in reply to Hidden]

Wow! A lush? Who knew? I’d love to try it. I must be a fellow lush 🍷

[Parminter in reply to Hidden]

'Apothic Inferno'.

Quite right, stuff it.

[Arkangel in reply to Hidden]

It must be so frustrating to make your own wine and not be able to drink it. I feel for you!

[DicCarlson]

Oh demon alcohol! I just started a 60 day booze free holiday. RLS has been creeping back on me and my latest blood test show quite low iron levels. I need to be retested as they only tested for total iron not Ferritin, TIBC or % saturation.

[Nlthomp in reply to DicCarlson]

Hello! Good for you! I’m heading toward a booze free holiday, myself. Not sure when, though. 😊 What is TIBC and % saturation. Do you have to request those or are they part of the ferritin results? Hope you can get your RLS under control.

[DicCarlson in reply to Nlthomp]

Most of us rely on the Ferritin Level to keep track of iron deficiency. And we can't really rely on "normal levels". We need to know the exact number. My Ferritin level was 49 with raging RLS - iron supplements nearly eliminated it.

Ferritin—measures the level of ferritin, a protein made by almost all cells in response to increased iron. The ferritin level reflects the total body iron. It will be low when there is iron deficiency and high when there is an excess of iron in the body.

TIBC (total iron-binding capacity)—measures the total amount of iron that can be bound by proteins in the blood. Since transferrin is the primary iron-binding protein, the TIBC test is a good indirect measurement of transferrin availability—the amount of transferrin that is available to bind to iron. (Note: Though TIBC is a reflection of the amount of transferrin available, TIBC and transferrin are not synonymous.). ransferrin saturation— dividing the iron concentration by the TIBC produces an estimate of how many of transferrin iron-binding sites are occupied; this is called the transferrin saturation. Under normal conditions, transferrin is typically one-third saturated with iron. This means that about two-thirds of its capacity is held in reserve. (Less commonly, the iron concentration may be divided by the transferrin concentration, not the TIBC. This similar estimate is usually called the transferrin index.)

Above is from... labtestsonline.org/tests/tr...

[Nlthomp in reply to DicCarlson]

Thank you so much for all the valuable information! I’ll be sharing it with my doctor next month... if he’s willing 🤔

[DicCarlson in reply to Nlthomp]

The info that "saved" me was this from Johns Hopkins Neurology Dept. Menu is on the left... hopkinsmedicine.org/neurolo...

[Nlthomp in reply to DicCarlson]

Thanks!!

[Beckonwood]

I find that alcohol makes my RLS much worse

[involuntarydancer]

Alcohol is a reliable trigger for me too.

[sweetiepye in reply to involuntarydancer]

probably because it metabolizes as a sugar .

[involuntarydancer in reply to sweetiepye]

Except that I can cope with an astonishing amount of sugary food without worsened symptoms. I assume sugary food metabolizes as sugar.

[sweetiepye in reply to involuntarydancer]

Maybe

[johannasuar]

Well I’m glad you got through your flight using alcohol, for me like the others, alcohol is probably the ONLY sure trigger of a super bad night even with my meds. Though I don’t give up a good drink with a fine meal or a party, I know I’ll be coming home to suffer. It seems you suffered too that evening, this should be your heads up about alcohol. Besides your meds have you tried Tramadol, that’s what I take daily for my RLS, it’s my wonder medication though it doesn’t work for everyone. When I travel to California from Florida where I live, or to NYC , my sons live in those states, I CON NOT sit through the flights without taking a dose of Tramadol, I’m on the lowest dose of 50mg. Movies are also an issue. Ask your doctor for a script just to try it and see if it works. That’s all I can offer, plus a ear to listen, that’s we we do here, the very BEST website for people that suffer from RLS. I even showed my doctor because he wasn’t knowledgeable about RLS, and I got lucky that he took his time to listen to me and went ahead and instructed himself. I was very lucky and blessed to have found him. Good luck, we’re here to listen and help.

[Nlthomp in reply to johannasuar]

Thanks for the thoughtful response, Johanna. Yes, movies can be torture, as well as flying. I take Tramadol at times, but I’ve gotten some unpleasant side effects. The same with Oxycodone. They both make me feel strange and tired the next day. It’s tough when the kids live all over the country. Ours are in NYC, Seattle and San Francisco. In most cases, they fly to NC to visit. I’m happy to hear your doctor is willing to work with you. Best of luck in your continuing struggle 😊

[johannasuar in reply to Nlthomp]

Too bad the Tramadol gives you bad effects, it’s one of the milder forms of medication for this horrid disease we have, I feel lucky that it does wonders for me. Like everything else, what’s good for the goose isn’t always good for the gander. Be well.

[Hidden]

Yeah, it sucks sometimes doesn't it. Air travel can make RLS worse. Stay sober and try not to give into this insidious disease..don't let it win. We all have to give it the good fight!!

[Nlthomp in reply to Hidden]

Thanks for the encouragement, Gramov8. I’m luckier than most people on this forum. My RLS comes and goes for months at a time, so at least I get a break in between. Wish you the best