third week of WED/RLS symptoms

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fliesatnight
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Joined: Fri Dec 02, 2016 6:29 pm

third week of WED/RLS symptoms

Postby fliesatnight » Tue Dec 13, 2016 8:18 am

Thanks for the introduction. I was so busy scouring the other forums for information that it took me a while to notice the "new members" posts.

I haven't had a chance to see a doctor or get an actual diagnosis yet, but here's what I've been dealing with.

I'm 41 and have had panic disorder ever since age 12 or 13. At 20 I suffered a pinched nerve or bulging disc in my neck that has recurred to some degree every couple of years since then. I mention this because I've often wondered whether it could be responsible for the occasional pain and numbness I've noticed in my hands and feet over the years.

I've suspected for a long time that I had something like fibromyalgia, as I developed a kind of low level full-body nervous system pain during my mid-20s. This has never officially been diagnosed but it's gotten steadily worse as I've gotten older.

At 30 I developed a dull headache that has never gone away since. I had an MRI but it didn't show anything unusual.

Before last month, the only experience I ever had that I'd describe as being similar to RLS was around five years ago. While sitting in the evenings I'd begin to have an uncomfortable sensation in my arms that made me want to get up and stretch. This lasted for around two weeks and then went away completely.

A little over a year ago I began taking Keppra for reactive tinnitus/hyperacusis. I took it sporadically and not for much more than two months at a time since it starts to affect my stress level and negatively impact my sleep at around the two-month mark. The first few days of withdrawal are rough though. On November 11th I decided to try taking 15 mg of Remeron in the hope that it would help me sleep, and this is where the real trouble started.

That night I woke up with horrific RLS in my arms and shoulders and was extremely drowsy from the Remeron the next day. At first I though I was fine and over the following days, I had only minor evening RLS symptoms in my arms. I seemed to be back to normal until I woke up on November 26th and everything went wrong. I somehow managed to bang my ulnar nerve on my hip bone while rolling over in bed and the pain didn't go away for half an hour. After that, the first thing I noticed was how much my legs hurt. That day and the following day I had pain and discomfort in both my legs and my arms. At least at that point it wasn't preventing me from sleeping but of course that all changed on the night of the 28th, when I began to have what I understand are more typical nighttime RLS symptoms.

The next day I read that some patients have successfully treated RLS with Keppra and started taking it again at 500 mg. I also read about melatonin being a potential trigger and discontinued it after taking 1 - 2 mg every night for the last 5 years. I'm also taking a multivitamin, iron supplements, magnesium, B and D vitamins, and guaifenesin. In the 17 days since this all started though the symptoms haven't improved and still cause significant pain and discomfort throughout the day and prevent me from sleeping more than a few hours at night.

I keep wondering what triggered it-- just the Remeron? Going off Keppra earlier that month? The fact that I didn't exercise for 48 hours before the 26th, which is unusual for me? Could the ulnar nerve injury have anything to do with it? That seems impossible but it is a weird coincidence that it happened right before I noticed the full-blown pain in my legs, and I have woken up with my pinky finger on that hand dead asleep a few times in the last two weeks.

I have an appointment with a primary care doctor in a week and one with a neurologist a few days after that. I have a copy of the WED medical bulletin printed out and ready to go. I'm a little desperate for any kind of relief, even if at this stage it's just from benzos or sedatives rather than GABA analogues or DAs. Any med recommendations or suggestions as to what to request from the doctor, other than the obvious blood iron test?

I'm in Pittsburgh, PA if by any chance anyone happens to know of a good doctor for this condition here.

Polar Bear
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Re: third week of WED/RLS symptoms

Postby Polar Bear » Tue Dec 13, 2016 6:14 pm

RLS symptoms can be described in many and varied ways, some describe it as a sensation, others use the word pain. It does usually start in the legs and can sometimes progress to the arms. You mention that your first possible symptoms were in your arms which is unusual but RLS as a disease is so varied that nothing is impossible.
It would also be unusual for an ulnar nerve injury to trigger RLS symptoms in your legs.

While you are waiting to see your doctor you could try using your shower head to direct really cold water at the affected area (it is pretty breathtaking), this worked for me. I would have used the cold water for about 15 minutes and it would often calm things for me for a little while.

Please ensure when getting blood tests that you ask for a Ferritin iron test, this is the important one. An ordinary iron blood test is insufficient. Also make sure you get the actual result, don't be accepting that it is 'normal'. If you do have RLS you will want your Ferritin to be as high as 75 - 100, not the 20-ish that is deemed 'normal'.

If it helps, here are the questions listed by a doctor to determine if it is WED:
1. Do you experience the urge to move?
2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
3. Will the urge to move increase if you are in a confined position?
4. Do you have symptoms both sitting and lying?
5. How long do you need to be at rest before your leg symptoms begin?
6. Do your symptoms only begin when your legs are in a specific posture?
7. How quickly do you get relief when you start moving?
8. Do your leg symptoms occur when you are walking?
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
10. When are your symptoms worst?
11. When are your symptoms least?
12. Do you find your symptoms are less in the morning?
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

fliesatnight
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Joined: Fri Dec 02, 2016 6:29 pm

Re: third week of WED/RLS symptoms

Postby fliesatnight » Wed Dec 14, 2016 1:24 pm

Thank you. Cold showers in the winter might be a little rough for me, but I've been taking multiple hot showers every day which helps temporarily to relieve symptoms. My answers to the questions would appear to be affirmative for WED although I seem to alternate "uncomfortable sensations causing overwhelming urge to move" with pain that kind of feels like body aches when you have the flu only much more severe.

Will be sure to request the ferritin iron test.

fliesatnight
Posts: 5
Joined: Fri Dec 02, 2016 6:29 pm

Re: third week of WED/RLS symptoms

Postby fliesatnight » Wed Dec 14, 2016 4:50 pm

Thought I'd started to figure out a way to cope by waiting to exercise until 10 hours after waking up, and taking 1000 mg of valerian root (which got me 7 hours of sleep the night before, along with exhaustion from a few 3 - 4 hour nights). This time the RLS is going crazy in my arms the minute I fall asleep and it looks like 2 hours is all I'm getting. I feel like I'm losing my mind.

legsbestill
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Location: Dublin Ireland

Re: third week of WED/RLS symptoms

Postby legsbestill » Wed Dec 14, 2016 7:08 pm

Hi fliesatnight (I love your user name), it sounds like you are having very disturbed nights and this will very quickly leave you feeling in despair. It is important to remain strong and positive. Most people find an acceptible solution to their rls which allows a fairly normal life. Polar Bear's questions are a very useful tool in trying to determine whether you are suffering rls. If your primary carer determines that rls is indeed the problem, he/she should be able to start you on medication which hopefully will provide relief. In the meantime, it is worth looking through the non-pharmaceutical section of this forum to find suggestions for relief which you can access immediately. For myself, I find a prolonged series of gentle stretches is often helpful, at least for a while, when symptoms set in. I also sometimes find if I prop my legs up above my head level for a little over 10 minutes this can help - I turn around in bed and prop them up on the wall at the top of my bed - sometimes I fall asleep like that. You should also research the known exacerbants of rls to be sure you are not inadvertently making your condition worse - antihistamines, anti-emetics, ice-cream (for some people) etc etc.

PB I am reeling at your hardiness - when I first read cold showers directed at the affected area I was thinking I really should try that but then '15 minutes'!!! I'm not sure I could cope with that! Although if it worked I suppose it would be well worth the pain.

Polar Bear
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Re: third week of WED/RLS symptoms

Postby Polar Bear » Wed Dec 14, 2016 11:15 pm

As we know, rls can affect each of us differrently. Some folks find cold/cool showers/baths help, others find a hot shower will help.

When I mention a cold shower, what I actually do (not full immersion ;) is sit on the side and direct the shower head at my legs.
More often I fill a big bucket with really cold water and immerse my lower legs for about 15 minutes or as long as it takes for them to calm, splashing the water up as high as possible. Using a cloth to get the cold water up above knee high. I haven't needed to do this for some time as my medication cocktail is now more efficient.

fliesatnight - please do note that it often takes several/many attempts until a medication solution is found that helps.
Mine is a cocktail of ropinerole, cocodamol, slow release 50mg tramadol. Sometimes the addition of a very low dose gabapentin. And clonazepam as a sleeping aid.
Note also that the urge to move can be present even if the rls sensations are not present. Hence the common problem of insomnia and the need to be up and about, even without the sensations.
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

fliesatnight
Posts: 5
Joined: Fri Dec 02, 2016 6:29 pm

Re: third week of WED/RLS symptoms

Postby fliesatnight » Thu Dec 15, 2016 7:43 am

Thanks to both of you. I've been stretching like crazy the last few weeks and I have a package of red leaf kratom sitting in my kitchen cabinet, although at this point I think I'm planning to wait until after seeing a doctor and getting some tests done before I give it a shot.

I just realized my sleep-deprived brain mistook my January 20th appointment with my new PCP for the 20th of this month, and then I called my neurologist to double check my December 22nd appointment to find they had canceled on me because of a scheduling error. I was able to get an appointment with a different neurologist but it's not for another month.

Polar Bear wrote:please do note that it often takes several/many attempts until a medication solution is found that helps.
Mine is a cocktail of ropinerole, cocodamol, slow release 50mg tramadol. Sometimes the addition of a very low dose gabapentin. And clonazepam as a sleeping aid.


Glad to hear you get relief from your symptoms. Hopefully doctors will be able to figure out something for me too.

ViewsAskew
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Re: third week of WED/RLS symptoms

Postby ViewsAskew » Thu Dec 15, 2016 5:51 pm

Waiting for doctors is terrible - many of us have been there. You sound as if you've done a lot of research - that is good!

If it were me and you didn't need to be concerned about legality, I'd try whatever I could. If nothing else, it helps you start eliminating things. I was lucky in that I had some leftover pain medication - it helped me determine that while the dose was too low, that using an opioid might help me. I'd try the kratom - it doesn't help my symptoms enough to sleep, but I'm on the extreme end; given how many people it does help, I'd mix some immediately.

Other things to try are sleeping at alternative times. There is a circadian rhythm to WED/RLS. My sweet spot was usually 3-5 AM until 9-11 AM. Somewhere in there things would usually quiet down enough to sleep some. I've also slept in a bath many times. My tub is short and I am on the tall side, so I never worried about sinking into the water.

If you can see your primary care doc, he/she might run the blood test for you so you at least have that.

A tale that may be helpful (or not, lol). My whole family has WED/RLS. My brother started complaining that his legs rarely bothered him, but that it was in his arms/shoulders. Eventually (took a few years), he started having more issues and started dropping things. Turned out he had some malformation in his spine that needed surgery. After surgery? No more symptoms in his arms - just the occasional ones in his legs. It was the spine issue all along. Why it was worse at night? Not sure.

Another tale...some of our members have multiple issues, both WED/RLS and something else. Make sure your doc checks everything. We've had several members who were treated relatively unsuccessfully for WED/RLS only to determine that they also (or only) had small fiber neuropathy.

Glad you found us - but so sorry you had to.
Ann - Take what you need, leave the rest

Managing Your RLS

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

fliesatnight
Posts: 5
Joined: Fri Dec 02, 2016 6:29 pm

Re: third week of WED/RLS symptoms

Postby fliesatnight » Sat Dec 17, 2016 11:07 am

I've always been wary of meds because of potential unwanted effects, so I guess it's ironic that I took that single Remeron pill when I didn't really need to and it seems to have triggered all this. I've been in pain for a long time and I've thought about trying something like Lyrica but the side effects have always scared me off. Guess I'm quickly coming to a point where I may have to take a chance on something though.

Sleep has been considerably better the last two nights. I've been limiting upper body exercise to within an hour after first waking up and I stopped taking the valerian root and started taking my 500 mg of Keppra right before bed (as opposed to a few hours before). Either one or more of those things has done some good, or I've just been worn out enough to sleep 7 hours or so lately.

Actually, the hours I normally sleep are what most people would probably consider weird. I prefer being up at night and for most of my life I've gone to bed at 7 am and gotten up at 3 pm. The last few days I've been waiting until the point of near-exhaustion to try to sleep, which is usually around 9 am.

Glad to hear about your brother's recovery. I definitely think I have something else going on besides just the RLS (if that's what it is). For years now sitting has occasionally caused pins and needles in my legs and it's so much worse now after all this started last month, so I wouldn't be surprised to hear that I have some type of neuropathy.

ViewsAskew
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Re: third week of WED/RLS symptoms

Postby ViewsAskew » Sat Dec 17, 2016 12:44 pm

If you can, you might find sleeping later to work quite well for now. Glad it seems to be abating.
Ann - Take what you need, leave the rest



Managing Your RLS



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

badnights
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Re: third week of WED/RLS symptoms

Postby badnights » Mon Dec 19, 2016 2:43 pm

Maybe it was the combination of stopping Keppra and starting Remeron. I had not heard of Remeron but it is described as a tetracyclic AD. The tricyclic ADs have been known to cause WED worsening in some people. Keppra is an anti-seizure medication, on the other hand, and some of those have a benficial effect on WED/RLS. So stopping the Keppra nad starting Remeron might have been a combined trigger for the RLS/WED.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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