INTRO – But Might Not Have RLS?

[GrandMAptm]

Back in 2013 (at the age of 62), I started taking each night pramipexole 0.25mg and clonazepam 0.25mg for the severe shin/ankle/foot cramps I would have each night. I was getting no sleep and feared going to bed. I knew once I would get to sleep I would wake up with such severe cramps that I would be shaking, crying, screaming. On the pain scale, it was definitely off the charts. My Dad had the same severe leg cramps. It took many years with his neurologist to figure out what worked for him. He (age 81 at the time) was prescribed 1 mg of pramipexole and 0.25mg of clonazepam. So when I started having the same symptoms as my Dad, I went to my doctor and told him which meds had worked for my Dad. The 0.25 dose of each worked for me for years, except on nights when I would eat dinner too late, overeat, or eat too many sweets.

I'm not really sure if I have RLS. I never really have the RLS symptom of the “Urge to Move”. I do have twitching in my lower legs during the day while I am sitting still or in the car. I can actually see the twitches, lots and lots of them. These have increased. At night, I used to be able to get up and use the bathroom and then eventually get back to sleep. Not anymore. Now, if I want to get back to sleep, I have to take more meds. Sometimes I can split my 0.25mg in half and take half that amount 1 hour or more before bed and the other half when I get up to use the bathroom. However, a few nights have been really bad and I had to take the full 0.25mg before bed and then half more (0.13mg) when I got up to use the bathroom. So it seems as though my medication dose is not lasting through the night as it use to. I also start getting twitches earlier in the evening.

Something interesting happened to me in Feb. 2018: When I got a bad case of the flu (that was the year many people died from flu complications) followed by severe diarrhea, I lost 15 pounds (6.8 kg) in 1 month. I was very, very weak. The twitching stopped. The cramps stopped. I wasn't craving sweets during that period, so perhaps that helped also. It took me a long time to get well and regain my strength and weight. Eventually, I started having symptoms again, but was able to get relief with only half the amount of meds (0.13 of each). Unfortunately, that is no longer the case.

And one night last week, I had no symptoms and slept through the night! It was glorious! This hadn't happened in a loooong time. That night was my first day on blood pressure medication (Lisinopril/Hydrochlorothiazide). I thought, oh my gosh, the blood pressure med is going to be my cure-all! But no, the RLS and cramps returned the very next night.

Even if I don't have RLS, I am taking the same medication sometimes prescribed for RLS. So it has been very helpful for me to read on this forum. After reading on this forum about pramipexole, I really would like to get off of it and maybe take gabapentin instead. Also, after reading about the 30-40 hour half life of clonazepam, I would also like to get off of it and on to something else. So I am thinking about getting an appointment with a neurologist to be able to pursue this goal. I have never been to a neurologist.

I have gained so much information from this forum already. Thank you all very much.

[Hidden]

Hi there, please follow the link below to read about the diagnostic criteria for RLS. To confirm a diagnosis of RLS you must meet ALL the criteria.

irlssg.org/diagnostic-crite...

If you don't meet even one of them, then you cannot say you have RLS. The key symptom of RLS is the urge to move. You could say this is what defines "restless" legs. If you don't have the urge to move, then it's particularly unlikely that you have RLS.

You also mention "cramps", which are where muscles contract painfully. This is not the same as RLS, although sometimes involuntary movements caused by RLS can cause spasms.

I have experienced both RLS spasms and "normal" cramps, they are different. They are not a defining feature of RLS.

I cannot offer an explanation then, why the dopamine agonist, Pramipexole. would relieve your symptoms.

However, long term use of a dopamine agonist can lead to the phenomenon of augmentation and I imagine this could happen even if you don't have RLS. Augmentation in RLS sufferers is usually experienced as a worsening of their RLS symptoms. I guess it might be possible, that any RLS symptoms you have, may actually be caused by the Pramipexole.

Follow this link to read about augmentation.

rls-uk.org/news/augmentation

Pramipexole also causes insomnia.

I agree with your plan to see a neurologist who hopefully will give you a correct diagnosis. I certainly wouldn't suggest you change to Gabapentin without a proper diagnosis.

You must also be careful about stopping the Pramipexole. You will get withdrawal symptoms. If you decide to do it, seek advice first.

[GrandMAptm in reply to Hidden]

Manerva,

Thank you for your reply and the information and links. I, as I'm sure do others, really appreciate all the great information you provide to people posting.

I definitely do not meet ALL of the Essential Diagnostic Criteria as listed on the first link you provided. #1 Criteria: I do not have the urge to move.

#2 Criteria: I do have worsening of the twitches during periods of rest or inactivity such as lying down or sitting; but I do not have the urge to move.

#3 Criteria: Movement does relieve my unpleasant twitching. However, I am not sure. Perhaps the twitches are still there, but I don't notice them when moving. But I do not have the urge to move.

#4 Criteria: My unpleasant twitching/and sensation of a cramp trying to start, does get worse in the evening and during the night. However, I try to keep still once asleep, since if I move to a different position or get up the symptoms become more pronounced. So no urge to move.

According to the Criteria, I do not have RLS.

I read the link concerning augmentation. That is why I definitely want to get off of pramipexole, and clonazepam, which helps with sleep. If I only take the pramipexole, I can't sleep. And I have read many of the posts on this forum concerning withdrawal symptoms. I know I can't go off the drugs by myself. That is why I plan on making an appointment with a neurologist.

[Hidden in reply to GrandMAptm]

Great to hear this has been of help.

It does seem you have some neurological problem even if it isn't RLS.

Certainly the twitching you mention suggests this.

Some RLS symptoms are caused by other underlying conditions e.g. diabetes, hypothyroidism etc.

Another feature of RLS is that many people also have PLMS, (Periodic Limb Movement when Sleeping). Up to 80% of RLS sufferers have this I believe and it is rare to have it if you don't have RLS. The sign of PLMS is that your legs kick frequently when asleep. Someone who has this will not know they're kicking because it doesn't wake you up. When I first started with RLS about 35 years ago, I didn't notice the RLS symptoms, but my wife told me I was kicking her in my sleep. It was many years later that I discovered this was PLMS.

[lidoplace]

Hello, I used to have twitching legs and still sometimes get bad cramps if I forget magnesium( spray with magnesium oil which is just mag flakes dissolved in water ) but the twitching stopped when I added T3 to my thyroid meds, using Natural DesiccatedThyroid. I have not suffered from them for 4 years now. Have you had your thyroid levels checked ?

[GrandMAptm in reply to lidoplace]

lidoplace: Yes I have had my thyroid levels checked recently and endocrinologist said they are great. Went to endocrinologist for first time recently, since a CT scan (done for other reasons) showed a 4.7 cm nodule on my thyroid gland. Had a fine-needle aspiration done and results are considered suspicious. I have an appointment later this month with surgeon to discuss options. Results from tests at endocrinologist: Free T3 – 2.93 (reference range 2.30-4.20), Free T4 – 1.10 (reference range 0.7l-1.85), TSH – 2.344 (reference range 0.490-4.670), Anti-TPO - <28 (reference range 0-60).

[lidoplace in reply to GrandMAptm]

Have you looked at HealthUnlocked Thyroid UK where you will find information to search and read before you go to the surgeon ? You will also see recommended thyroid levels when taking thyroid hormone- you will see yours are in range but not optimal which we need to function properly. Good luck with your journey.

[GrandMAptm in reply to lidoplace]

Thank you for that information. I will definitely do some reading on the Thyroid forum.

[Jphickory]

Doesn’t sound like RLS to me.

Have you had a thorough and complete blood panel done recently? I would start there. The blood work will show, among other things, if you have a nutritional deficiency. Anytime there is cramping hydration, magnesium, calcium and potassium levels demand a close

look.

[GrandMAptm in reply to Jphickory]

Jphickory: Yes I have recently had a blood panel done at family physician and at endocrinologist. Had my Vitamin D level checked also. It is 37 (reference range 29-101) and that is with taking a multi-vitamin each day that contains Vitamin D3 1,000 iu. Potassium 4.4 (reference range 3.5-5). Calcium 9.1 (reference range 8.4-10.2). I do not see a test for Magnesium on my blood charts, unless it is listed as something other than Magnesium.

[Jphickory in reply to GrandMAptm]

Well good...you had the panel done. I’d ask why they didn’t test for magnesium. I take a powdered magnesium citrate supplement that has greatly reduced my RLS. Although I don’t think you have RLS, you may benefit from magnesium citrate also. I buy it in a powdered form and mix with a cup of water and take at bedtime.

It is interesting that you had a symptom free night recently. If you have another such night, I’d carefully think of what may have been atypical about the day preceding the restful night sleep. (Ie.. Did you refrain from certain foods, stand for a long period, take a long walk etc... ). This info may help provide a clue to the cause.

[Eryl]

Cramps are not usually regarded as part of rls. They are possibly an indication of low magnesium, so a magnesium supplement before bedtime or increasing leafy green veg in your diet could be a solution.

[GrandMAptm in reply to Eryl]

Eryl: When I first started having this problem back in 2013, of course I tried everything before seeking medication. Magnesium supplements didn't work. Potassium supplements didn't work. After reading on this forum, 3 days ago I started taking Magnesium Glycinate (200mg) at night. However, since I started that I have not had very good sleep – I describe it as a semi-sleep state. I'm not sure if this is due to the Magnesium. I have been on it for 3 nights – and 3 nights with semi-sleep. However, it might also be due to the extra dose of pramipexole/clonazepam I take when I get up to use the bathroom. May have to go off the Magnesium to determine what is the cause.

[Franklin123]

Hello - Reading through your message it seems to me that you have not got RLS as most people know it (certainly me). It could of course become it. Night times are a worry and I understand how you feel the fear. I was prescribed a benzodiazapine by a neurologist, but I did not feel that the possible addiction, and side effects was for me so I am still trying to increase my Iron - taking it just before bed, which is better for rls sufferers. My medication is ropinirole, which I am successfully decreasing the dose. I am now on 1 mg daily, which I take before dinner (around 5.30 p.m). I have also been taking prescribed Baclofen for spasms and cramps for some years, and I am now trying to reduce those too. Pregabalin is another I was offered, have tried and was not happy with the zombie type feelings I got from those. Gabapentin does work for some people, but it did affect my eyes. My main pain killer is Solpadol 30\500. I always save two for night waking. Also, my nights are affected by the activities of the day. Make sure your ferritin iron is over 60. I do hope this has helped to know that many of us have short sleep episodes; in my case I accept it now. Good luck.

[GrandMAptm]

Update: Last night I took a dose of pramipexole/clonazepam(0.13mg of ea.) and the magnesium glycinate (200mg) at 1 hour before bedtime. I actually slept 5 hours before waking up to use the bathroom (so much better than usual), maybe the magnesium IS helping. Did NOT take any extra meds when up for bathroom. Had a very difficult time getting back to sleep, eventually did, but woke up due to pain in my right calf – burning, aching pain, not cramping. Turned over, got back to sleep eventually (still twitching) and woke up an hour later again with the burning, aching pain.

When I get up in the morning my legs are really tired and aching, but that goes away later. My mind does feel better this morning, since I didn't take the extra meds during the night. Less foggy. I also did not have mild headaches during the night, which I was experiencing when taking the extra meds.

Jphickory: I actually started keeping a journal just last month when symptoms of twitching and cramps started increasing. There seems to be no obvious reason for my one night of pain free sleep, except it was the day I started on BP medication. I even had a chocolate cupcake earlier that day!! Although timing for sweets is key for me. If I eat sweets early in the day I'm ok, if I eat sweets in evening I will pay for it that night. Sounds like I should have my magnesium level tested. When I return to GP for BP recheck next month I will ask about having that done.

Franklin: Thank you for your post. It's always good to hear what works for others and to also hear that others are suffering with sleep deprivation; so I am not alone. I thought about supplementing with a tablespoon of blackstrap molasses each day to increase my iron. Or maybe I should also have that checked with blood test.

It just seems like everything has come crashing down on me at once. I was fine and able to do lots of long walks. Then end of September developed Morton's neuroma on the bottom of my left foot. In fact, I'm wondering if the Morton's neuroma has contributed to my leg problem, since I'm sure I am walking differently due to the painful sensation on the bottom of my foot. Then mid-October the results are “Suspicious” from the FNA biopsy of my thyroid nodule and most likely I will be having surgery in the future. Then end of October had to start on BP med, after results of a 7-week log of recording BP. I feel as though I went from optimum health to poor health. Oh well, it could be worse. But I sure miss the walking

[Merster]

Either pain or heebies