Self-diagnosed

[Anonymous]

I haven't found a Doctor in my area that even knows about RLS. I have searched and come up short on finding one. (the reason i haven't replied sooner.)

I'm taking right now Naproxen 500mg its the only thing that seems to even help (if just a little).

Without insurance its hard to find a doctor that will help. My fiancee' first seen something about RLS and told me about it. She said "That is what you do at night with you sleep and what wakes you up.)

All I know is that it got really bad in the fall of 2001 and its been getting worse ever since. I just started moving around more and not sitting or laying down as much it seems to help alot. I don't have much pain and the creepy crawlies are less than they were. I even cut back on the smokeless tobacco. Was up to a can or more a day.

I sleep now more in the day get upto 6 hours but still have focus problems . To close it seems to me that I had RLS for many, many years, but it became more troublesome in the past 2 to 3 years.

Thank you
Vannod

ps sorry for not responding sooner.

[jumpyowl]

I looked you up but no info on where you live. I wanted to give you some idea on doctors. Lack of insurance is a problem but it also gives you more flexibility about to whom you can see. (If you let them know you have no insurance they will give you a break in price - the listed cost are inflated because insurance companies and governments bargain about how much they pay.)

You could also get insurance, now before your condition gets diagnosed by a doctor. RLS is little known enough that it may not count as a pre-existing condition (it has never been diagnosed by a doctor, right?).

The problem is with sleeping that you probably have periodic leg movements during the night that leads to "arousals" (when you are not conscious yet but near awakening). I had a sleep test and I had 186 arousals during one night! So you do not get enough delta sleep and this leaves you exhausted.

What is in smokeless tobacco? (I have never smoked).

Naproxen is a NSAID, is it not? If so, it will probably not help much.

The least expensive drug I found helpful is Hydrocodone, but it is still a prescription drug. Quinine (tonic water) and magnesium supplement might help. Look at the other forum, nonpharmaceutical methods, for other ideas.

Let me know the area where you reside. Also look into some health insurance before it is too late.

[jumpyowl]

Well, last Wednesday, I had a twinge of conscience about having an appointment with my GP. I called and much to my dismay, my appointment was 15 minutes prior to my call. Since he lives 20 miles away I changed my appointment after the Memorial Day weekend.

Last night I had a mild attack of kidneystone pain. I drank some water, took some nitroglycerin (as a smooth muscle relaxant for the urether walls) and took a double dose hydrocodone and 0.5 mg of Klonopin. Then tried to sleep.

I woke up at 4 am and feel considerably better. I can't stop taking Neurontin (or Topamax) because I am not on them any more. But this will make me think twice before I start on Neurontin again (I was going to do it before I see the sleep doctor, Dr. J).

I do not expect much from my GP but I will let him know that I want to see Dr. J. I probably need him to give me permission as he is my gate keeper, but the truth is that I already made an appointment with Dr. J due to the time delay (it takes 6 weeks at least to be able to see him, he is also a pulmonologist and very busy).

I shall keep you all informed on what happens tomorrow. I am mostly on hydrocodone only (twice a day) with an occasional klonopin.

[mapmaven]

Jumpy, I wish I could take that kidney complication away from you, you have eNUFF to work on right now ! I know nitro has some wonderful uses, I just wish it would be gentler on the vasodialation... that makes for some wicked headaches. Have you discussed sonic disruption of the stone for purposes of passing it, with your urologist yet? It seems to have been really effective for some of the former patients I've worked with.

Speaking of headaches, I've discovered (yes, I had heard it before, but just HAD to try and be the invincible one ... right... ) first hand (first head??) that going cold turkey with caffeine is not recommendable. Sooooo, I'm weaning off of that as some of the "get control of what you can, first" theory you were recommending. I'm also trying to "beef" up my RBC count/ferritin levels to acceptable levels with supplements and diet. I have such paradoxic reactions to medications that I have attempted all my life to avoid the chemical routes and stick with the hand that was dealt to me.

I can't make my appointment with the doc until tomorrow, so I have no news on my end of things yet concerning sleep studies/knee replacement. I may have something useful by the afternoon, and will definitely have my full hemo panel results by then.

The last 3 nights have been less than peaceful, and last night was really rough. It's starting to cross the border between aggravating and painful.

Vannod, I think I've been one of those "had it all my adult life" ones, too... it just never made itself obvious 'til I had a bone fide daytime job. I'm glad you have a support partner, your fiancee sounds caring, alert and helpful.

Well, I'm definitely rambling/not able to focus, so I'm going to have to shut down. At least I get to sleep later in the morning (the med clinic is across the street ), maybe I can come from the land of the reacting, back to the land of the thinking tomorrow afternoon. Type y'all soon!

Eleanore

[jumpyowl]

Please do not take the kidney complication away, I would not wish it on my worst enemy. But I know what you mean and thanks!

When I have kidney stone pain it is only 10% chance that it is from stone. It usually is from a spasmic shut down of the urethra from a myoclonal cramp in the smooth muscle in the urether wall. Lucky me, I once had the same thing happening in the left descending cardiac aorta which perfectly mimicked a heart attack. The important thing is that in such cases a double dose nitroglycerin helps, heck with the headache.

Let us know the lab results Eleanore and the next step you will be taking!

[jumpyowl]

As you all may remember, I settled down to hydrocodone with an occasional klonopin (0.5 mg) at night.

The original hydrocodone dose: once in the evening [5mg/500 mg] has been insufficient from the beginning. Now I take one or two pills of Hydrocodone 10 mg/350 mg in the evening.

However, I had to start to take it in the afternoon as well as I was low on energy. If I tried to take a nap without medication, RLS would hit me with a vengeance, so bad that I would have to jump out of bed. However, another dose of hydrocodone if taken early enough allowed me to get some sleep in the afternoon and awake feeling better.

When there is some stress during the day, the RLS symptom hits earlier and with more intensity. I can tough it out for a while but usually is not a good idea because taken late the medication does not work well at all.

Yesterday afternoon after a brief and nonrelaxing nap, the sensations were so bad that around 7 pm. I took an anticonvulsant (25 mg Topamax, for the first time in weeks) with the evening dose of Hydrocodone. That enabled me to sleep until 3 a.m. Then an hour later I managed to fall asleep until the morning.

There is an interesting interplay between pain and paresthesias. During the past week I had quite a bit of pain accumulated during the night, quite similar to the knee pain and the sciatica in the lower back I had several years before. But I had almost no paresthesia. However, yesterday the pain was not so bad, the discomfort was more of the unbearable type of perasthesia. This morning the pain is also less (and no paresthesia yet, that comes after lunch).

I missed my last appointment with my GP and have not made a new one. Possibly will see him next week but I do not expect much from him save his approval to see the sleep doctor, Dr. J.

[jumpyowl]

Keeping it brief. My main medication is still hydrocodone but the pain is definitely increasing during the day, so I have to take the higher dose of codein and when I can get it, something extra.

Exercise does not help but I still try to walk everyday. However, the distance is shorter and shorter.

I will have to have a heart-to-heart talk to my sleep doctor ehom I will see for the first time toward the end of the month.

I have been researching SOMA. Interesting! Turns out my poor daughter happened to take it several years ago. Literally there is almost nothing she has not taken before, eventually what is helping is extended relief morphine sulphate. And some hormone supplement!

I will have to choose soon whether I want to try dopamine agonists at all. I think I will even if it is for a short time!

[sardsy75]

Keeping it brief. My main medication is still hydrocodone but the pain is definitely increasing during the day, so I have to take the higher dose of codein and when I can get it, something extra.

Exercise does not help but I still try to walk everyday. However, the distance is shorter and shorter.

I will have to have a heart-to-heart talk to my sleep doctor ehom I will see for the first time toward the end of the month.

I have been researching SOMA. Interesting! Turns out my poor daughter happened to take it several years ago. Literally there is almost nothing she has not taken before, eventually what is helping is extended relief morphine sulphate. And some hormone supplement!

I will have to choose soon whether I want to try dopamine agonists at all. I think I will even if it is for a short time!

This is not sounding good!

Are you on straight codeine or over-the-counter stuff and what strength? I see you haven't strayed back to the Neurontin

While i'm all for waiting to see what your sleep doc says, you should definitely get in to see your GP to see if he can't do something for you in the meantime....or am I banging my head against a brick wall here? You should not have to "tough it out"!! I can read your stress levels from here, and they are not good, my dear friend

You are on the right track with keeping up the exercise, even if it is only for 5 minutes ... or even 5 metres! As you probably well know, outdoor exercise enables you to gain the benefits of fresh air and sunshine (as long as it isn't raining or snowing!) and sleep improvement -- as well as the general body strengthening.

Also, even though you know your own kidneys much better than I do are you drinking enough water??? Water intake, and lack thereof is the most commonly overlooked thing sometimes!

I have a friend in Melbourne (who I met through another support group) who has Chronic Fibromyalgia as well as RLS & PLMD. She is 30yrs old. I think she would be able to relate to your daughter's situation as she is unable to even sit for more than half an hour without major troubles; and she is a graphic designer by trade Her current drug regime includes the following:
-Slow-release Morphine
-Baclofen (a muscle relaxant)
-Symmetrel (a parkinsons med used to treat the imbalance between dopamine & acetylcholine)
She has also used Ultram and Neurontin but has recently replaced them with the Morphine and Baclofen.

Lots of (((((hugs))))) and positive thoughts being sent to you

Take care of you!
Nadia

[jumpyowl]

Thank you Nadia! How preceptive of you. I am under stress for another reason and that is probably making my RLS/PLM worse. Plus I am playing around with medications switching way too soon. But I will be OK.

Here I want to publish a "stolen" German article (in English) from an rlssupportgroup of yahoo. Which makes an important point in defense of dopamine agonists and precursors in the use for RLS. I had to do this after picking on them as an off lable use and being trial and error in the pergolide thread.

1: CNS Drugs. 2004;18(1):27-36. Related Articles, Links


Role of dopamine receptor agonists in the treatment of restless legs
syndrome.

Happe S, Trenkwalder C.

Department of Clinical Neurophysiology, University of Gottingen,
Gottingen, Germany. shappe@gwdg.de

The restless legs syndrome (RLS) is defined by four essential
criteria obligatory for clinical diagnosis which were established,
and recently revised, by the International RLS Study Group. These are
(i) the urge to move the legs, usually accompanied or caused by
uncomfortable and unpleasant sensations in the legs, which are (ii)
worse during rest/inactivity, (iii) partially or totally relieved by
movement and (iv) worse at night/in the evening. Treatment with
levodopa leads to symptom relief, but augmentation (occurrence of
symptoms before levodopa administration in the evening) may occur,
limiting the long-term use of this drug. This article gives an
overview of the treatment in general and the role of dopamine
receptor agonists in the therapy of RLS and periodic limb movements
(PLMs). Dopamine receptor agonists are widely used as an effective
treatment for RLS and PLMs, presumably because of their longer half-
lives, lower likelihood of augmentation and good tolerability
compared with levodopa. It was shown that, for example, pergolide,
ropinirole, pramipexole and cabergoline alleviated RLS symptoms in 70-
90% of patients. A new non-oral (transdermal) formulation of one
dopamine receptor agonist, rotigotine, has recently been developed
and shown to be efficacious in RLS. Further research should focus on
long-term observations and comparisons of different dopamine receptor
agonists in RLS.

Publication Types:
Review
Review, Tutorial

PMID: 14731057 [PubMed - indexed for MEDLINE]

Sweet dreams!

[becat]

Jumpyowl..........You do so impress me. You drive and neverending hunger for knowledge warms my heart. Your an angel we have all found or been given here on earth.
Just, makes me feel a little safer having you on our side.
have a great day.

[jumpyowl]

for making me feel a bit less stressful. Even if it is undeserved it achieved the effect desired. But remember I could not do whatever I am doing without you all supplying sound, frank, unbiased info based on personal experiences.

I some time feel sorry for practitioners because they miss out on all this input as many of them have no time (or even inclination) to listen to their patients. Could they do so, they would become so much better doctors!!!

Another one of those tough nights, huh? As it is 12:30 A.M.

[becat]

Yes Sir, it is late he in BIG Texas. Maybe it's the weather. Maybe it is the stress. who knows.....? just hate going to bed feeling like I have a fight on my hands. There are many that do not understand the dread of "going to bed".
You and my mom would never stop talking. She is almost 70, looks 55-60, takes no medicines at all. She loves to figure out why things work in our bodies and holisitcally deal with them. She's good like you at staying on task, researching what she can until she can figure it out.
We were raised to listen to our bodies and fix them ourselves. I'm sure she is horrified at the list of drugs I own. I don't tell her about them all. And I do TRY many things when she is around. She has a way of finding the strangest stuff, some of it works. LOL I told about you many times.
You a doll and we treasure you.
Stay well our friend.

[jumpyowl]

Actually I went back on this anti-epileptic medication, NT, yesterday morning. June 16. I took 300 mg in the morning and in the evening. In the morning it was only NT but in evening I added a 10/365 hydrocodone.

This medication is weird. When I was on hydrocodone alone RLS was gone but the pain was getting to be better and better defined between the doses (actually during the drug-free periods). Movement helped some but this nerve pain did not go away with movement. This pain closely resembled the sciatica I had in my right leg 4 years ago (it was typical, also self diagnosed), my doctor (an internist) immediately prescribed hydrocodone (5/500) every 6 hours and Celebrex (anti-inflammatory). These two drugs got rid of the sciatica in 2-3 weeks.

So by a few days ago, I again had this sciatica type nerve pain in both legs and across the lower back, almost as if the break I was taking from hydrocodone (I was only taking it twice a day instead of four times) encouraged and ressurrected the pain. Then when I started neurontin, the pain diminished but in its place I had a shadowy sensation at the same location (obviously along the nerve pathways).

I am looking out for it to happen again with NT. The last time I took NT I had the same thing happening not with the pain but with the RLS sensation (perasthesia). The whole legs felt strange, the crawling sensation subdued but still were there as if under protest and the whole leg was feeling like it was waiting to burst. This was the main reason why I stopped taking NT.

So to summarize:

Painkiller only -------- well-defined nerve pain in between
dosing periods, no RLS sensation or RLS pain


Neurontin only -------- repressed RLS sensation, RLS pain only,
pain stopped by movement

Weird, huh? Now, remember that I take neurontin alone only in the day time. At night I always take the painkiller, too. Also with painkiller only I can take a nap, with neurontin only - forget it, I cannot even rest but I am yet unable to describe the sensations which make it unpleasant.

Well, perhaps after a few more nights I will know more. Soon I will take another NT 300 mg and some painkiller to go to sleep. If not enough, I will take a sleeping draught. Tomorrow I will take 300 mg NT around noon time and 600 mg NT at night. That should make the bunny jump out of the bush!

I hope it is clear to you ? If it is not I am sorry to be confusing. It is not so clear to me but after all I am on Neurontin .

[jumpyowl]

I am still experimenting with Neurontin and am finding out interesting things. These I will let you know in a few days or as soon as I get the data organized. I apologize for my previous post. It is a bit confusing. But I think I am on the track of something

I found a bried message on the EKBOM SUPPORT GROUP WEBSITE [http://welcome.to/EKBOM] which I think is quite interesting. I will just post it here. Then will comment on it as my collection of interesting insight grows.

Restless Legs Syndrome (RLS)

by John R. Cross MCSP; Dr.Ac.; SRP; MRSH

This article is written following 30 years experience as a chartered physiotherapist and natural medicine consultant. I was introduced to the topic of restless legs whilst treating royal marine commandos in the mid 1970's. They complained of the classical symptoms of radiating pain down the legs, burning sensations in their lower back and legs, twitching and restlessness in the legs and cramping. I had always assumed that it was an 'older person's' complaint. I did quite a bit of research and investigations into my patient's lifestyle, eating habits, predisposing conditions, temperament etc. I could not conclude any common denominator with the exception of there being a mechanical irritation of the sciatic nerve either from the lower spine of the side of the knee.

It was then that I met Dr. John Tracey of Pinhoe, Exeter. He was a retired GP. who had invented a mode of therapy called 'Impact Therapy'. It is a way of treating joint conditions with sand bags. To cut a very long story short, he shared his research with mine and we combined to write a paper for the British Medical Journal on our findings. Unfortunately, the BMJ did not have the foresight or gumption to print it (they don't know what they missed).

We found that the main cause (92%)of Restless Legs Syndrome is a mechanical one. To produce restless legs, there has to be inflammation of either the sciatic nerve or its main tributary, the common peroneal nerve. The common peroneal nerve wraps around the head of the fibula bone at the outside of the knee and in many people it is very superficial (just underneath the skin). The condition that John and I discovered was coined Superior Tibio-Fibular Syndrome (STF) which is essentially the same as RLS. The joint between the upper end of the fibula and tibia can become subluxed (thrown out of joint), get arthrosed (fixed due to arthritic changes), be subject to direct injury or be thrown out of alignment due to a bad ankle sprain. As a result of these, the common peroneal nerve becomes 'trapped' thus giving tension, pain and 'leg jumping'.

The physiotherapy treatment of this condition is to strengthen the ankle joint and the thigh muscles by exercise and to free the STF joint by manipulation, mobilizing by Impact Therapy. The results are often stunning and the overall success rate, over the years, has been remarkable. Obviously, not all RLS sufferers will respond favourably, but I would highly recommend that sufferers seek a course of treatment with a chartered physiotherapist. I would be very interested to learn of individuals' progress.

John Cross

I am not sure that Dr. Cross is right but clearly they spent a loy of time and effort and they are people who think independently.

Anyone out there has a comment on this approach?

[sardsy75]

Hey Jumpy

Your previous post did actually make sense to me (but then again, i'm a quirky kinda person at the best of times - and i've used that dang Neurontin ).

With the differing results you are getting from the painkiller and neurontin I am certainly most curious to see where this might lead!

Have you managed to snaffle an appointment with your GP or did I end up banging my head against a brick wall there? (and I thought I was stubborn )

I read through the article you posted from the Ekbom site and thought it was quite interesting. I'm thinking of taking it to my physiotherapist to get his thoughts on it (the arthritis in my wrists is playing up - "hello" to winter!!) when I go to see him sometime during the next week or so. He's a pretty cluey guy and likes to think "outside the box". Will let you know what he says.

In the meantime, I feel that your stress levels aren't quite as high as last weekend, which is a good thing; but i will continue to send you lots of positive thoughts and (((((hugs))))) to keep you going.

Take care of you!

Nadia