16 years and finally a diagnosis

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
NatureGal0812
Posts: 6
Joined: Sat Feb 06, 2021 3:36 pm

16 years and finally a diagnosis

Post by NatureGal0812 »

Hi- I am a new member and have been reading like crazy. I first started with muscle twitching in my left calf (2004). It was really intense for weeks and I was sent to a neurologist for a consult. Of course when your google muscle twitching the diagnosis that shows up is ALS and I was terrified. The neurologist did an EMG which was so painful. He decided the twitching was from overuse ?? About a few moths later as the twitching continued I started having what I thought was nerve pain in that calf. It was at times excruciating consisting of burning..electrical current..vice like...stabbing and pulling. The doctors continued to tell me it was nerve pain. I was given sleeping pills so I could fall asleep but nothing ever for the pain. My sleep became worse ...waking unrefreshed every morning. I would become incredibly fatigued within a few hours ...not sleepy but deep fatigue. Two sleep studies were done with nothing to show.
Fast forward after 16 years I went to Duke Hospital and saw a neurologist who specializes in sleep disorders. Bingo...he could not believe no one mentioned RLS in all these years. I had the classic symptoms except I don’t feel the need to move my legs although I know it helps. The pain is always present when I sit or in bed. It’s become more intense and worse over the years.

The neurologist already did a full iron and ferritin panel and it was really good. I have just started on my journey with Lyrica 25 mg because I am ultra sensitive to meds. I hope and pray this helps as the chronic fatigue has basically ruined my life...I have missed out on so much and developed anxiety and uncontrollable emotions because of the poor sleep. I honestly had no idea just because you sleep doesn’t mean it is good or deep.
Maybe I have something else causing the fatigue but that is to be determined. Sorry this is long but my journey has been long. I always knew my fatigue was not CFS or Lyme etc...but knew it was sleep related.
Just wanted to say hello and I will be doing a lot of reading again today...

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: 16 years and finally a diagnosis

Post by stjohnh »

Hi NatureGal, I'm sorry you have to be here, but glad you found us. I hope your new medicine helps. I wouldn't be too hard on your prior doctors. The urge-to-move (i.e. impossible to ignore urge to move your legs) is the major symptom of RLS. It sounds like you don't have urge-to-move. Can you find out what your ferritin level is (the actual number, not just "normal")? "Normal" for most people is fine, but RLS patients need a ferritin much higher.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... 5717315599
Blessings,
Holland

NatureGal0812
Posts: 6
Joined: Sat Feb 06, 2021 3:36 pm

Re: 16 years and finally a diagnosis

Post by NatureGal0812 »

Hi Stjohn- Thank you for writing back. I have really enjoyed reading lots of posts and it actually feels good to know I can relate. I have been on a lot of forums and I just didn’t feel like I belonged there.
I feel fortunate to have found a neurologist who specializes in sleep disorders since from what I have read RLS is. I have a good amount of pain with mine and as far as the urge to move...I believe I have that but just don’t when I am in bed. I do when sitting though and will move my legs.
My ferritin level was 148 which he said did not require transfusions. He said I could take oral but didn’t feel it would make a huge difference.
I wanted to mention I am taking Levothyroxine since 2006 and read that could have an impact but not sure what else I could take instead.
Speaking of iron he did do iron level (72) and iron binding along with saturation percent.
I am on my first week of Lyrica and pray it helps once I can tolerate the dose he wants me at . I am extremely exhausted today but slept wonderfully with the help of Klonopin. Apparently it wasn’t a restoring or deep sleep.
I have lots to read and maybe get some other ideas on how to manage this. I need my life back even if it’s half.
Naturegal0812

mfh5
Posts: 5
Joined: Thu Jun 03, 2021 5:06 pm

Re: 16 years and finally a diagnosis

Post by mfh5 »

Hi NatureGal, I just joined today and read your thread. I have almost same story as yours, unrefreshing sleep, waking up fatigued, very low energy levels in the morning, disturbed mood and all, for almost more than 16 years if I recall correctly. I am having this chronic fatigue since early 2000's, through out the day, 7 days a week, 365 days a year. No one was able to diagnose and everyone(local docs) did their experiments, sort of, over me.

Finally, in this Feb, I had my sleep study(due to load snoring almost daily) and I was diagnosed with sleep apnea(OSA). I started using CPAP at the pressure recommended in my sleep study and it improved my sleep and morning fatigue as well. But the "pain" in my both calf's is still there. I again went to my sleep doc and he noticed that I have very large amount of leg movement during the sleep study, both RLS and PLMS. He suggested to get advise from neurologist for this.

Neurologist prescribed me with pregabalin 50mg daily, two days back, I have started it but no noticeable difference so far. Can you update about the Lyrica whether it is helping or not? Currently I am using a local brand of pregabalin and would love to switch to Lyrica as its by more renowned Pfizer and my mother used it as well for neuropathic pain and it worked really well for her condition.

Thanks.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: 16 years and finally a diagnosis

Post by badnights »

@Naturegal You're taking levothyrozine, pregabalin, and clonazepam - anything else? I am curious about the clonazepam (Klonopin); how long have you been on it and at what dose, if you don't mind saying? Some people find it actually helps with WED/RLS symptoms, but most people find it very difficult to tolerate if they have otherwise untreated WED/RLS, because the WED/RLS overpowers the sleeping pill and you end up staggering around, half asleep and banging into things. Maybe you're one of the people in whom clonazepam controls the urge to move? Or did you lack the urge before you started clonazepam?

I am hesitant about the diagnosis, not only because of the poorly defined urge to move, but also because of the way you first presented, with physical twitching. Can you recall if there was any urge to move with the twitching? Was it a totally involuntary twitch? I know it's been a long time so you might not recall.

However, despite my reservations, I find the rest of your description does fit the WED/RLS diagnosis.
burning..electrical current..vice like...stabbing and pulling.
etc.

You might want to try oral iron anyway. Most people don't absorb iron when their serum ferritin and iron are that high, but I think I do. If you decided to try it, you would take it (maybe 2 pills of 325 mg ferrous sulfate == 65 mg elemental iron each) every day with vitamin C, preferably on an empty stomach, & assuming your doctor told you it was ok) for 2-4 weeks before you noticed any improvement in your symptoms. So take it for 6 weeks to be sure, and if your symptoms haven't improved, you can stop.

That experiment will only work once you're on a stable medication regimen.
My sleep became worse ...waking unrefreshed every morning. I would become incredibly fatigued within a few hours ...not sleepy but deep fatigue.
That's exactly how I felt when I finally went to a doctor and (after a year) got a diagnosis.
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.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: 16 years and finally a diagnosis

Post by badnights »

@mfh5 Hi and welcome. I can totally relate to feeling like a guinea pig for doctors! Sometimes we know better but have to suffer thru their experiments before they'll believe us.
I again went to my sleep doc and he noticed that I have very large amount of leg movement during the sleep study, both RLS and PLMS.
RLS/WED can't be diagnosed from a sleep study. There are no characteristic leg movements or anything else a sleep study measures that would let the doctor make a diagnosis. WED/RLS is only diagnosed by the doctor interpreting your description of your symptoms.
Currently I am using a local brand of pregabalin and would love to switch to Lyrica
You're probably OK with the generic, unless you're allegric to a filler (if they use one) or some ingredient that the capsule is made of. The medication in both the generics and the brand Lyrica is pregabalin - it is exactly the same substance.

Is it helping at all yet? 50mg is a very small dose. You will probably need something more sizeable than that. I imagine your doctor has a plan to titrate you up - have you talked to him about that? It's always a good idea when the doctor prescribes a new medication, or changes to an existing one, to ask before you go "what should I do if this doesn't work?" You need to know if you can call or email if you are not getting results and are continuing to suffer and lose sleep; or if you're allowed to raise the dose; or what.
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.

Post Reply