Nice to find you. I have had RLS for forty five yrs

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rthom
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Joined: Sat Dec 31, 2011 3:03 am

Nice to find you. I have had RLS for forty five yrs

Post by rthom »

Nice to find you. I have had RLS for forty five yrs, I am forty five. I have been told as a baby I could not be picked up as I would scream and fight to be put down. It was painful to be touched and was fed in my crib or playpen as I could not tolerate being held. In my preteen years I had would scratch holes in my legs at night to try to relieve the sensations and had nightly nose bleeds. My parents used to tie me to the bed at night to try to control my movement. They had no idea what was wrong. I was officially diagnosed about 15 years ago and have been on the med merry go round ever since. I am essentially a nice person but am extremely hyperactive and agressive in nature although I have learned to control myself, I work hard to be social. I find it very hard to concentrate on anything as the RLS is a constant distraction. I have never been symptom free. The RLS affects my arms and trunk as well as my legs. (I wonder if it is possible that it can be felt in my head as I have buzzing sensations in my face and scalp or if that could be med related) I use aroma therapy, baths, and massage as much as I can tolerate it (my wife has to do massage to relieve the muscle cramping at times) as well as meds and my diet and nightly routine are very specific. The consequences of deviation are too high. At best I with optimum meds on board I can get up to 2 1/2 hrs continuous sleep in a 24 hr period but there have been times when I have gone for 5- 6 days with no sleep and at times up to three weeks where I logged only approx 9 hrs sleep in total. I am very afraid of that happening again. It is getting far worse as I age, I am far less tolerant and fear the future. I am not sure how much worse I can take. I have over the past couple of years developed severe poorly controlled hypertension and am also being treated for depression. If anyone has any suggestions for treatments they have found assisted with depression I would be grateful.
About depression, I have found the common treatments doctors want to use make it much worse as they want to hospitalize and treat you which limits your mobility and ability to get up and move/bath etc when it's bad, making everything including the depression far worse. Usually combined with antidepressants that make the RLS far worse. I found when I was finally given enough meds to knock me out for just a few hours the depression was much better and felt manageable again. When we cannot get enough meds to get to sleep, how do we help ourselves? When the depression is that severe I am no longer able to recognize that the lack of sleep is the problem and life becomes overwhelming. Keeping in mind that at that point I am still maintaining my routines and meds and yet I seem to go thru these cycles. Oh, my doctor advised me that depression usually only lasts for 2 years and I could just wait out the cycle. :? As a canine behaviorist I spend a lot of time with the dogs outdoors and I do find that it gives me the best chance to find some peace and feel ok.

badnights
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Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

Hi rthom
I have moved your post to a new topic which I titled from your first words. This way we can respond to you in a dedicated space.

I cringed when I read that they had tied you down - I guess they were at their wits' end, but omg what pure torture for your baby self.

Your inability to be touched sounds odd to me, but some people do have that when the symptoms are on them. You seemed to have it all the time - what horror, to think that means the RLS was on you all the time...

I have heard that people have RLS of the face.

Sleep deprivation - TRUE deprivation - is a killer, and it alone could account for your hypertension, depression, and even aggression. Once I was sent to a psychiatrist because of a particularly bad RLS time, and he was wise enough to send me back, with a message to my GP saying that sleep deprivation can cause the symptoms of every major psychiatric disorder, even psychoses. (My GP had thought I was depressed)

What are your meds and what doses? Are you aware of the fairly large range of medications that are being used successfully to treat RLS/WED? Different things work for different people, but within the three main classes of drugs (DAs or the Parkinson's drugs, anti-convulsants, and opioids) there are a large number of specific meds that may or may not work for you. The opioids are the only class that deals with the severest of the severe.

You have wisened up to the benefits of routine and outdoor exercise. Have you also devoted a serious effort to learning about our disease? I made a list for people who want to do that:

  • RLS Foundation medical bulletin
    http://www.rls.org/Document.Doc?&id=2112

  • Mayo algorithm
    http://www.mayoclinicproceedings.com/co ... b555569081

  • Medications for RLS/WED
    http://www.rls.org/Document.Doc?id=2155

  • Brochure about RLS/WED
    http://www.rls.org/Document.Doc?id=2153

  • The RLS Foundation website:
    http://www.rls.org/

  • A book for physicians who have to treat RLS that is also very informative for patients:
    Hening, Buchfuhrer and Lee, 2005. Clinical Management of Restless Legs Syndrome.

  • A book for physicians or patients:
    Chokroverty, 2010. 100 Questions and Answers About Restless Legs Syndrome.

  • A book for patients that physicians could also learn from:
    Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome; Coping with Your Sleepless Nights.

  • A book for lay people about RLS. This is my favorite to give people when I want them to understand the impact RLS has on one's quality of life: Yoakum, 2006. Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic.

  • The website for the southern California support group of the RLS Foundation, maintained by Dr. M. Buchfuhrer, who will answer questions about your particular problems with RLS and provides an archive of previous questions and his answers. http://www.rlshelp.org/

  • Iron and RLS/WED
    http://www.rls.org/Page.aspx?pid=524

  • Jill Gunzel's website for non-pharmaceutical aids and for attitude:
    http:/www.rlsrebel.com/

You can also learn an awful lot by reading through past posts on this board. I hope some of this information helps you to find more ways of dealing with your RLS/WED.
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.

Chipmunk
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Location: Madison, WI

Re: Nice to find you. I have had RLS for forty five yrs

Post by Chipmunk »

I also have concurrent severe depression, which predates my RLS/WED, but which is exacerbated by the sleep deprivation. I have a Philips 10,000 lux light which I use every day for an hour immediately after waking. The earlier in the day that you start using it, the less time you need. I get up later so I do an hour, but if you get up at 5:00 or 6:00 you can get away with 15 minutes. I find it really helps with the depression, especially in the winter.
Tracy

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

Polar Bear
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Re: Nice to find you. I have had RLS for forty five yrs

Post by Polar Bear »

rthom,
badnights has given you a wonderful response full of great information.
I just want to add that I'm glad you found us and to say that we are all here
to support each other. We are love to hear of good times and are also here
for the days, or more likely the nights, when you feel you need a good old rant.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

badnights, please let me know if you get my PM, not sure if it was sent properly

JustKeepWalking82
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Joined: Mon Aug 05, 2013 4:49 am
Location: Pensacola, FL

Re: Nice to find you. I have had RLS for forty five yrs

Post by JustKeepWalking82 »

rthom, I know that this is over a year and a half later, but I do know what you mean when you say that you couldn't stand being touched. I had that too growing up. For me, I had severe sensory defensiveness. I couldn't stand a ton of things including being touched because apparently it caused me physical pain. Some days were better than others. I actually had to go to classes to get myself used to things like utensils in my mouth.
Marisa
Always know that there are good people in the world to pick you up when you fall down.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

It's good that you could find something, did it help much?

JustKeepWalking82
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Joined: Mon Aug 05, 2013 4:49 am
Location: Pensacola, FL

Re: Nice to find you. I have had RLS for forty five yrs

Post by JustKeepWalking82 »

It did for the most part. I still have defensiveness to certain things like how things feel and how they smell. For example, I wash my hands all the time and I love to keep clean, especially since my Mom has no immune system due to cancer twice and other health issues, and when I first rub the liquid soap on my hands I will visibly shudder and almost cringe from the feeling. It is something that my body just doesn't like to come in to contact with. For me, I will always have sensory defensiveness to a degree just because mine was so severe when I was a baby until classes. Basically, what happened is that your parents (this is just my assumption based on myself getting help as a baby because I didn't like getting touched either) probably got you acclimated to being touched very slowly by baby steps (pun intended :D) and only touched you very gently or with something very soft for a little bit and then moved on to touching you a little bit more each day until you were probably able to be picked up. For me, being touched on the bad days caused me physical pain. On the better days, I didn't really feel much. To answer your question, the classes did help but only because my parents found out what I had very early on and the fact that I had to be able to function normally in the world.
Marisa
Always know that there are good people in the world to pick you up when you fall down.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

No, my parents didn't do that, they put me in a crib till I was over 2yrs old (literally) and tied me into bed, hands and feet at night after that. I have not gotten used to touch and do not accept touch of any kind now. I hate water and anything new like the concept of gentle breezes or massage, back rubs..... are a punishment for me not a good part of life. However I do what I need to--so if someone is upset I will give a hug, I bath and work outdoors etc... It is just a horrible feeling for me. The same applies to my clothes and sweating--they I keep to the most comfortable I can find, really soft and really breathable, as these are things I can give in to, without affecting others.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

Things like skin cream make me feel like I am being asphyxiated, you?

Chipmunk
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Re: Nice to find you. I have had RLS for forty five yrs

Post by Chipmunk »

Oh my g-d Randy, that's horrifying that your parents did that to you. I can't imagine. :cry:
Tracy

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

Polar Bear
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Re: Nice to find you. I have had RLS for forty five yrs

Post by Polar Bear »

What a cruel condition.
And being tied in a crib would have been so distressing for a baby/toddler.... not knowing what was happening.
I'm assuming they reckoned at the time that you were 'being a difficult baby'..... how awful.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

Yup, I was a "Bad Baby" I screamed any time someone tried to pick me up--so the crib for me. Could you imagine it as a child, people holding you by the legs it seems, what a complete torture. At least they quit trying to hold me instead of insisting on modifying my behavior.

JustKeepWalking82
Posts: 30
Joined: Mon Aug 05, 2013 4:49 am
Location: Pensacola, FL

Re: Nice to find you. I have had RLS for forty five yrs

Post by JustKeepWalking82 »

No, skin cream doesn't make me sensory stuff act up. People with sensory defensiveness react negatively to different things. I went through a similar experience to what Randy had, although it was only a one-time thing and my dad quickly put a stop to it. Actually, one of the physical therapists took me away (when nobody was looking), tied me down in a chair and forced a spoon with food on it in my mouth all the while I was screaming my head off. My dad came in and set her straight. I actually had "Ouchie Days" where I didn't want to be touched, and the physical therapists put me into a kiddie swimming pool with water so that I couldn't get hurt.
Marisa
Always know that there are good people in the world to pick you up when you fall down.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

It's odd what people do eh? And those that should know better. My parents were foster parents and high ranking church representatives that were sent to straighten out churches in different areas, and missionaries. These are the people that are seen as kind and gentle....... Unfortunately my experience did not change as I didn't have someone to help me. But I put a stop to it in my early teens by leaving. (the police told me I should) It's all my choice now.

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