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Another New Member

Posted: Sun Apr 26, 2015 3:00 pm
by pinkynose
Hi to all of you. I am most grateful to have found this board. I am an active 66 year old women recently retired. My retirement plans have been put on hold due to RLS.

I have always been a poor sleeper and compounded with my early work hours have often turned to Ambien to get a nights sleep. This past year has been a tough one (i was mugged, cancer in a family member, etc.) and I took the medication much more frequently.) I am giving this information because by taking this medication i do not really know when my RLS began. My RLS (I have not been officially diagnosed) takes several forms. Yes, I have times when my toes move independently, my need to move my legs, especially my left one is uncontrollable. However when I first began really feeling symptoms it felt like my leg had an electrical current running through it and there would be a feeling like a faucet suddenly turned on and energy would rush up my calf or shin. I do not know if this is a valid symptom or something else additionally. The faucet feeling has subsided but the electrical current remains even when my leg isn't moving. It sometimes feels like bugs crawling up my legs.I also get a pins and needles feelings in my feet.

My biggest problem is of course sleep. Not knowing when I will have a bad night makes it is difficult to make plans. My brain just doesn't function when I don't get sleep. I'm so thankful I'm retired. At 1st I medicated with of course Ambien which allowed me to sleep through the RLS. Due to Ambien hangover I have since changed to putting a piece of Xanax under my tongue when I wake up due to my leg. This has been working but last night I needed more. I know I will not be able to use this method forever.

I had a complete blood profile but did not test Ferritin. I will have that done. I have been taking Iron (Ferrofood by Standard Process Lab) for a month. Other things you should know: I have some cervical stenosis and fusion in that area and a cyst in my hip caused from years of Ballet. I have learned how to work out and get exercise around those issues and was getting plenty of exercise before all of this.

Reading different posts it seems that I am at the beginning of this journey and it is very overwhelming. I'd appreciate anything anyone can offer as to where to go from here. Also a recommendation for a Neurologist in the Miami area would be helpful. Thank you.

Re: Another New Member

Posted: Sun Apr 26, 2015 6:54 pm
by Polar Bear
Welcome to the discussion board. You explain your symptoms very well, the creeping bugs and the feeling of electricity. Many of us feel the sensations differently but the one thing in common is that they are horrible and that moving/walking will eventually ease the symptoms.
Sleep or the lack of is also such a problem.

You say you have not been officially diagnosed, are you yet at the stage of feeling the need of specific medication for your RLS/WED symptoms.
Please look at the Just Joined information.
There is also the consideration of whether to try medication or to try the non pharm treatments.
Personally I have found that the non pharm treatments did not help me. Occasionally, many years ago, I'd get relief when putting my feet/legs into a bucket of icy cold water for about 20 minutes, this might give me time to get over to sleep.
Consider buying this book - Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. It will provide you with clear information regarding RLS.

Also, please do have your ferritin serum level checked, this is pretty important. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Ambien or Xanax may help you to sleep in spite of your symptoms, but it is not actually treating your RLS/WED symptoms.

Exercise is strange when it comes to RLS, a little helps, too much can aggravate.

Re: Another New Member

Posted: Sun Apr 26, 2015 7:36 pm
by pinkynose
Thank you for the information! I've already ordered the book and will get my ferritin serum level checked. As far as being at the stage of RLS medication I think I'm still at the stage of denial. I keep hoping that a non pharm treatment will work. I've already experienced the inconsistent outcome between exercise and RLS which is unfortunate because my plan was to teach Pilates now that I'm retired. I guess I need to rethink some stuff...

Re: Another New Member

Posted: Mon Apr 27, 2015 7:09 pm
by Polar Bear
It's good to know your ferritin level and if it's low you can consider if you should work on that.

Re: Another New Member

Posted: Thu Apr 30, 2015 5:56 pm
by ViewsAskew
Some of the hardest cases, I think, are when there are potentially multiple things going on.

The RLS/WED can absolultely be creepy, crawly, electrical. Mine has been since I was a child. It isn't usually pins and needles, though. That might be neuropathy. And, the back issues can be related to RLS/WED....or not! It's hard to know.

Sometimes medication may help separate them. If you try a dopamine agonist, for example, it might get rid of the electrical, but not the pins and needles. Then you might know that you might have neuropathy, too.

The main way to identify the RLS/WED is to ask the following:
1. Does it go away when I move?
2. Setting aside the sensation, do I have a STRONG urge to move? That you MUST get up and walk, stretch, exercise?
3. Does it happen when tired, sleepy, and relaxed? That is the most likely time to happen, so whatever happens then is most likely WED/RLS. It can absolutely happen at other times, too, but get to know that sensation and feeling - if you experience it at other times the same way, that is most likely also WED/RLS. If it's different, it may not be.

Hope some of that helps.

Re: Another New Member

Posted: Tue May 05, 2015 1:20 pm
by pinkynose
Hi "ViewsAskew"
Thanks for your response. I have been paying close attention to my symptoms and now believe I have Neuopathy & RLS.

Everday I experience an electrical type feeling which can also be crawly. It usually disappears late afternoon and comes back again in the evening. HOWEVER, I DO NOT have an urge to move, but walking takes it away temporarily, It is present when sitting, standing and laying down. (Neuropathy?)

In addition, At night sometimes I have a different sensation of pulling (perhaps the muscle is involved but I'm not sure) which is more intense and the urge to move is STRONG! Movement stops it temporarily. (RLS?)

I try to ignore the daytime symptoms and control them at night with a heating pad as needed. When I get the other symptoms I try homepathic treatments and sometimes resort to prescription sleeping meds or anxiety meds.

I know that sleeping meds, etc only knock me out and do not treat RLS. Another question, do you know if not taking prescribed medication makes my RLS worse in the long run? I was preparing myself to take Mirapex if I can't continue this way, but now that I may have Neuropathy as well I'm not feeling as good about the possibility of taking Gabapentin or something similar instead.

I am reading Clinical Management of Restless Legs Syndrome and doing my best at interpreting it. Sleepless nights do not help my brain. I appreciate any insight you have. Thank you so much.

Re: Another New Member

Posted: Wed May 06, 2015 3:38 am
by ViewsAskew
Taking medication should not make your WED/RLS worse. It could temporarily do so if you experienced augmentation (only with dopamine agonists). But, the experts say that unless your disease has progressed on its own, nothing we take should permanently make it worse. I'm not sure I believe that, but I can say that the chances are very, very, vary slim.

If I were new to pharma medication and was ready to try it, I'd start with gabapentin or one of the sister drugs. That's because it can really help the insomnia and at the same time can help neuropathy and pain. It also doesn't cause augmentation. If it didn't work, I'd try a dopamine agonist. If the DA worked, I'd push hard to find a way to take a break from it - maybe each weekend to take an opioid, or once a month to take off a week. Something. That, I think would allow someone to use a DA for years without augmentation. And, as long as the DA didn't cause other problems, it could be an excellent treatment.

But, if I wasn't sure what to try, I'd definitely want to research other options, including medical marijuana and things such as kratom. There are issues with both and I am positive you can become dependent on kratom, so I'd want to find a way to avoid that, but they both can be very effective.

I'd also make sure that my doctor did the correct blood work and would push hard for an iron infusion. The results can be spectacular - no drugs or any kind needed. Of course, it doesn't always work, but getting a ferritin test is definitely important. I'd also push for a vitamin D test.

Re: Another New Member

Posted: Wed May 13, 2015 10:44 pm
by pinkynose
I am going to a see a Neurologist next Wednesday. From my reading I am thinking I have Neuropathy with RLS secondary. I have been to my PCP and she says I have symptoms of both but she admits she is not an expert in this field.

Much of the time I have a feeling that the back of my legs and calves are sunburnt and burning. Usually it's my left leg, which is the one that has a bone cyst in the hip and causes me problems. I get pins and needles in my feet and my calves feel swollen. Sometimes I get a burst of water feeling (although more electrical) going up my leg. These feelings do go away if I walk, but i do NOT have an urge to move.

However, every night at approximately 1:15am I get a different sensation in my legs causing me to have an overwhelming urge to move. I just have to. If i get up or stretch my legs it will temporarily stop. I use a heating pad and this helps while I'm using it.

I am going to a Neurologist next Wednesday and will see what he says. There is no one on the list in South Florida so the best I could do was get a doctor in a reputable group who has RLS listed as something he deals with. I have questions to ask HIM that I got from another post and my blood work (my ferrotin is 57) and of course the book on RLS that was recommended. I also had nerve testing and will get the results in a few days.

Does anyone who is reading this have experience or information on neuropathy with RLS as a secondary? Or something I should know before I go to the doctor? I guess I'm having this insane hope that if I figure out what's causing the neuropathy maybe I can fix it and the RLS will eventually go away. It's just hard to give up hope.

Re: Another New Member

Posted: Thu May 14, 2015 2:39 am
by ViewsAskew
Many of us here have primary or ideopathic (no known cause, but considered primary). That's because many people with secondary RLS/WED find out that it goes away once the main problem is resolved. If you do have neuropathy, the treatment to get it under control very will may resolve the RLS/WED. And, a few of the drugs used for neuropathy, also may help WED/RLS - so you have reason to hope!

Re: Another New Member

Posted: Wed May 27, 2015 1:18 pm
by pinkynose
I'm really confused and a bit crazy right now never knowing from night to night if i will sleep. It is effecting me a lot. I forgot to turn off the burner on the stove yesterday and am very emotional and depressed right now. I thought I had this under control by knowing that if all else fails at around 4am the feelings in my leg calm down and I can get a few hours sleep. Last night I was able to fall asleep around 3:30am only to be woken up before 6am by the same pain, burning and twitching feeling. Getting out of bed isn't compelling to relieve the symptoms but sleep is not an option. The twitching makes my legs move, but they don't jump. I read about PLM and figure that is what it is? Is this part of RLS?? I think so.....

I saw a Neurologist last week and due to severe stenosis in both my cervical and lumbar spine diagnosed by an MRI 9 years ago he ordered an MRI and nerve testing that will be done this week. When I go to the PT my symptoms are much improved for at least 2 days which makes me feel my spine is definitely involved. But,the neurologist feels my symptoms are probably not RLS based on the fact that they came on so quickly and were not proceeded by any illness such as a virus. I am not sure that I am in agreement after all I've read on RLS. The burning sensations are probably not RLS, but the others seem to fall in the RLS category. My gut says I have stenosis and secondary RLS but I don't know.

Of course as things go, the day after I saw him I remembered I had come down with a fairly significant case of fever blisters about 2-3 weeks before my symptoms began and also 6 weeks prior to that. I realize that fever blisters are the herpes virus and I am wondering if this is significant to have started my symptoms?? My lip where the fever blisters attack when I have an outbreak has been sensitive for the last month but no outbreaks. Prior to those 2 outbreaks I rarely got them, but this past year has been a stressful year. I was mugged, my husband had parathyroid surgery, my brother had a cancer operation which did not go as we hoped, my son married and I retired. Needless to say I think stress has played a big part in all of this.

Any thoughts you have would be appreciated. It is such a comfort that there are people who are willing to share their experience with me.

Re: Another New Member

Posted: Thu May 28, 2015 3:52 am
by ViewsAskew
Most of us do not have involuntary movements. We move because we MUST. We move because the sensations drive us CRAZY. We move because it relieves the feelings. That said, I do find that there are times I swear that if I refuse to move them, that they will sort of move on their own.

I have no idea what the neuro is talking about related to a virus. RLS/WED is not brought on by a virus. Your cold sores are not in any way related that I know of.

There have been so many cases of spinal injury or surgery followed by secondary RLS/WED, that it appears to happen often enough. It sounds like you know more about RLS/WED than your neuro - not a good sign! Can you see another doctor for a second opinion after your tests?

Re: Another New Member

Posted: Thu May 28, 2015 1:16 pm
by pinkynose
Thank you for your response. It solidifies some thoughts I had. Yes, I think as far as RLS I may know more then the neurologist at this point and I do not feel he is a doctor that would be open to being educated. I will get my results in 2 weeks and see what the tests show. I will listen to what he suggests and probably post his suggestions. But, in the meantime I will also look into finding another neurologist. Unfortunately, he was the best I came up with when I did my initial search. If worse comes to worse I have considered coming to CA to see Dr. Buchfuhrer. Mr brother lives outside of LA so maybe I can work something out.
Thanks again.

Re: Another New Member

Posted: Thu May 28, 2015 10:04 pm
by ViewsAskew
While I adore Dr Buchfurher and fly to see him myself, I don't think I'd go see him if I had other neurological stuff going on. He is great with RLS/WED, but he's a pulmonologist, not a neuro.

If you post a few large cities close to you that you could get to, we might be able to identify someone for you.

Re: Another New Member

Posted: Fri May 29, 2015 12:59 pm
by pinkynose
Good morning. Thank you for the good advice.
I just checked on the foundations physician referral list again and found a number of doctors available that I could get to. I checked this list when I 1st joined and do not remember having all these choices. Perhaps it's been updated or perhaps my memory is not so good these days.

I live closest to Miami, Fl or the next big city would be West Palm Beach. Here are the closest doctors on the foundation's list. If you or anyone else knows about any of them and could pass on the info, if allowed, it would be great. If there is a doctor not on the list that you would recommend that would be great also. I am listing in order of closest proximity to me.
David J. Seiden (Hollywood, FL)
Natalio J. Chediak (Boca Raton, FL)
David Wentzka (West Palm Beach)
Michael Novak (Naples)
Henry Calas (Stuart)

In the meantime I will check them out on their website. Thank you for all you do.

Re: Another New Member

Posted: Fri May 29, 2015 5:19 pm
by Polar Bear
I'm sorry I can't help you with choosing a doctor (I'm in UK) but wish you well in your selection.