Looking for support

Hello community. This is my first post, and while I have not been officially diagnosed, I am looking for some support. I swear I feel crazy as my family and friends do not understand how this affects me. I remember having an RLS attack while watching Harry Potter and the Order of the Phoenix in the theater, so 2007. I finally talked to my doc and I was prescribed quinine to use as needed and found it quite helpful. I went into a remission period in about 2011. In early 2013 I went to my doctor to discuss some tingling and numbness in my hands and feet, thinking Reynaud's, and he believed I had peripheral neuropathy (the symptoms were different, so I did not associate them with RLS, I also did not know that RLS was a lifetime, progressive illness). I also had low B12 and started on monthly injections which I still do. I also had been dealing with chronic headaches for years, but thought it was stress related from my job. A neurologist appointment and some MRI's later that year revealed nothing, just that I had RLS with no further discussion on it. By then I had constant tingling in my hands, feet, lower legs and arms. Some blood testing for things like lyme disease, and such yielded nothing.. In 2014, I had a second opinion at another neurologist who didn't even discuss RLS with me. By then, the tingling was all over, and constant. It wasn't until I came across a post here that led me to believe RLS was my issue. A sleep study was done in Feb of this year, with that doctor touching on my RLS, but again, nothing except to increase my iron intake (I was low normal) and go off my elavil (amitriptyline) which my regular doctor prescribed for my fatigue (it helped my headaches as well for a bit until I adjusted to the dose). I was waking up on average 22 times per hour in the study. I am now waiting for a second sleep clinic for a referral to someone who has more experience with RLS as my doctor does not. I've been to many websites, including the Southern California one and there is so much info, but I know that it is different for each individual.

I'll list my symptoms as I do believe most are related to RLS and poor sleep quality.

1) Constant tingling all over my body. 2) Wake up with headaches most days, fatigued, tired-like I've run a marathon in my sleep, body aches. 3) Twitching of feet, legs, hands, fingers, sides, worsens as the day progresses, though can be present in the morning. Alcohol does tend to worsen this. If I concentrate, I can stop them, but not for long. 4) Slow speaking. Like what I want to say is in my brain, but the word does not come to the surface, so I pause a lot. 5) Forgetfulness. If I don't write it down, it could be gone. 6) Anxiety and Depression. 7) Difficulty staying asleep as I wake up twitching sometimes, or I become too aware of the tingling. 8) Weight gain, from poor sleep and depression, or I'm just lazy :). 9) Cardio exercise such as jogging increases the tingling for a few hours afterwards. 10) Low tolerance for cold. I get hot and sweat really easily now too.

What I've tried.

Tylenol, Advil, Aleve, Excederin, baths (I can't sit still long enough to enjoy them but they do occasionally help, exercise, magnesium, herbal sleep supplements (helps to get me to sleep, does not mean I stay asleep), ativan which was prescribed for my anxiety but no affect on my RLS symptoms, stopped amytriptyline, increased iron intake, B12 injections, massage, acupuncture. Marijuana will be tried very shortly.

Basically, I just needed to let all of this out. I need people who understand, who can sympathize, and help me. Thank you for reading my journey so far and any help and support is immensely appreciated.

18 Replies

  • Read your notes sorry you have so much the matter but I don't think you have rls because having to walk about is the main thing. Sorry can't say anymore x

  • My house is so creaky sounding and walking around disrupts my cats and my hubby. I think that's why I twitch. I really do appreciate the reply.

  • Sphynxowner,hi sorry you have so much going on,have you had your thyroid tested? Has Fibromyalgia ever been suggested? I would say from the symptoms you describe RLS is not the cause of your problems as nowhere do you mention the urge to movr.I appreciate you have creaky floorboards which may disturb your household but the urge/need to move with RLS is so intense you are unable to resist. You have no choice but to move.I hope you soon find answers to your problems, good luck., Pipps x

  • Here is some drug-free advice, as I've had almost all those symptoms for more than 25 years, and now I don't. 1) Research and do a Candidas cleanse for at least 2 weeks. 2) Exercise for at least 20 minutes everymorning: 15 minute fast paced walk and 5 minute jog...just enough to break a sweat (kick in adrenaline). 3) Obviously, don't drink and smoke and eat fast foods. Eat as chemical and preservative free as you can. 4) Research good sleep habits and follow them religiously (i.e. no watching tv or computer time at least an hour and a half before bed time, go to bed at same time everynight, etc. etc. 5) Try 3 mg of melatonin everynight (bite a tablet in half if you have to) 6) Cut out all dairy, and I mean caesin and whey powder too! It is in so many foods it is crazy. This works for me and I finally feel great!!! All drug free, and cheap. All you need is will power! Good luck. Let me know how this works for you.

  • My willpower is pretty poor and I'll freely admit that I am more lazy that I should be, but I'm working on it. Melatonin does nothing for me. Helps the hubby though when he needs it. Thank you for the ideas.

  • It doesn't sound like RLS to me.

  • Hi Sphynxowner. Just read your notes. I have had RLS for about five yrs now but really don't experience most of your symptoms. The sleeplessness is caused because the RLS feeling can only be relieved by walking or some motion or medications. You have too many other problems that are totally unrelated to RLS. Some people experience pain, I never had any pain and some say RLS doesn't cause pain which I agree with. If you really have RLS you would be very desperate for medications because other than extreme movement, I don't know of other solutions. Headaches aren't part of this, they do happen but I believe it's because of the lack of sleep or rest when the meds need to be changed or increased. The weight gain has nothing to do with RLS, I am also an extremely healthy person, good diet, excersise moderately so a strange feeling inside your body that it's what RLS is, does NOT cause weight gain. Some people might have tingling of their limbs, but again I think that's caused by something else. I'm surprised your doctors haven't tried some medications just to test for relief of RLS. I went to a neurologist and he told me I had all the symptoms for RLS, but mine don't match yours in any way. I take TRAMADOL, it's a pain killer that works very well for me, pain killers, opiates, work for many as TRAMADOL works for some but not for others. If you DO have RLS you might have to go through many meds till you find the right one or right combo that will get you rief. There are many people here that are very knowledgeable about RLS, I hope one of them responds. They have helped me tremendously and educated me. Good luck. Talk to your doctors about meds, usually the meds for Parkinson's are used, now, some of those do make you gain weight.

  • Once I see the other sleep specialist, then I'm going to see what is in store for me. I'm pretty confident that there is some RLS there, but there may be other issues also. I'm going to the specialist armed with all of my info including medications and so on. My doc is not too familiar with RLS and the medications, thus I asked to go to someone else. Thank you for the info.

  • Hi

    your dr is wrong to give you quinine it's been research that it should only be used for malaria nothing else its not good for you , reading rest of your notes doesn't ring all the bells for RLS but then we're all different and we all react differently to meds Marijuana is a good one although can be hit-miss sometimes knocks me out doesn't make me high im a big believer that when used for med reason it works on it but when used for pleasure then yes makes you high . there's no real test for RLS everything comes back normal apart from Iron which has to be higher than normal for RLS sufferers (although my neuro dr won't have it) hope you do find out whats going on with you and you get some rest x

  • The quinine was years ago, and my old doc who was more old school. Thank you for your support

  • Sphnxowner, you need to have all the criteria for RLS to be diagnosed with RLS. A sleep study will not diagnose RLS, but will diagnose other sleep disorders such as sleep apnea and PLMD. I will post the RLS criteria for you. You have to have that urge to move to have RLS, staying in bed makes it worse, Getting up to pace is what we have to do to get some relief. RLS worsens at night which why we cant sleep and have to pace, we sometimes get called the Nightwalkers. Here is the link for the criteria for RLS, all of them must be met. irlssg.org/diagnostic-criteria

  • Thank you for that link. I know that I move my hands and feet a lot, almost constantly, and that is what helps with the sensations. The urge is there, and I can resist it if I'm concentrating, but because I have it so much, I just can't think about it that much in a day.

  • You sound like I did before I started Maripex in 2002 and have taken some form of Dopamine agonist ever since. i am currently on time release requip which controls the urge to move very well most of the time. The sleep studies are useless. You and all RLS suffers would sleep ok if we could just get rid of the body being so restless. Control the movement and you'll sleep like a baby.

    Take a combination of time release requip (ropinorole) and a load of neurontin, with a very small amount of vicodin 5/300 and the movement will stop and you won't be an addict as some will say you are, just get some rest.

  • Thank you for the support!

  • Sleep studies are not useless. 70% of all RLSer's have PLMD, which means they kick in their sleep. And, it is also good to find out if you have sleep apnea. Sleep studies are useless for RLS, because RLS only happens when you are awake. IF you are awakened by your legs, you probably do have PLMD, which is Periodic Leg Movement Disorder (rhythmic jerking of the legs while sleeping)

  • Is tho tingling u describe like an electric shock or more like an itch?

  • It feels more like a vibration, such as after you've mowed the lawn and you feel the residual vibration. Worst in my feet and hands, but all over and pretty constant to different degrees. I've also described it as when your leg falls asleep and it starts to get feeling again, a dull pins and needles tingle.

  • My RLS is definitely the "electric shock" description. ;)

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