New member - needs help

[mscarrie]

Hi. I am in need of some good advice. I have had RLS as long as I can remember, even as a child. I remember my mom staying up with me many nights, just rubbing my legs for hours, often using ben-gay. I am now 47 years old, and have exhausted all forms of treatment. I don't know what to do, and I am desperate to find relief. I cannot tell you how many days and nights I have spent crying, cursing, walking all hours, and sometimes even to the point of suicide. I know that sounds extreme, but my case is extreme. My RLS occurs in the morning, afternoon and night - at any time in a 24 hour period, including symptoms lasting 24 hours or more. I have been to 2 different neurologists, and was eventually sent to the OSU Neurology specialists (Ohio State University). I really thought since they were a teaching hospital, I would find help. I was wrong. I have been on all the medications known to help - on and off label meds. Neupro, Requip, Sinemet, Gabapentin, Lyrica, Mirapex, Tylenol 4, Fentanyl Patches, Clonazepam, Valium, and a few more I cannot remember the names of. The dopamine agonist type medications work in the beginning, but after about 2 or 3 months it becomes necessary for the doc to increase dose. Within another month of this, my RLS becomes worse than before I even started the medication, so then on to a different medication. It has been 2 very long years of the worst symptoms I have ever had my whole life. I have been careful to follow and implement EVERY single thing known to cause or make worse RLS. I cut out all caffeine, exercise often, do my stretches, etc. I do not smoke or drink alcohol (although I am beginning to think I should).

The docs, all of them, say that some of my symptoms are not RLS, because they are not knowledgeable enough I think or maybe I really am losing my mind. At its worst, my RLS can go from my upper thigh (front and back, hamstring) all the way down into my feet. Sometimes it's my whole leg, sometimes its both legs, and sometimes its only my lower or my upper leg. There is absolutely no rhyme or reason to my symptoms. I need to know if there are any others out there who have these symptoms as well. If so, please tell me if you have found anything that has helped. I am in serious need of help.

I am new to this whole concept of message boards and do not understand how they work, so bear with me. Thank you so much for listening to my plea and complaints. Right now, I am taking Baclofen several times a day with clonazepam with only minimal relief. mscarrie

Forgot to mention in case its important:
Diabetes type 2, with insulin pump
On blood thinners also.

[Polar Bear]

mscarrie - you are very welcome although we are sorry that you have need of us.
Your doctors say that some of your symptoms may not be WED/RLS and this may be so, sometimes there are also other ongoing conditions.
Have you had your iron serum ferritin checked. This is not normally done automatically with blood works. The level should be at lease 100.
Get this test done and if dr says it is normal ask for the reading, 20 may be 'normal' but not for a sufferer of WED/RLS. This is very important.

Also your medications of Baclofen and Clonazepam are not really going to help much.
Many have tried Baclofen, including myself, without success, it is a muscle relaxant.
Clonazepam is an anti anxiety medication which tries to control spasms and aid with sleep.

Although you have tried many of the usual medications, please note that many of us work best with a combination of several medications in a lower dose. I use ropinerole/tramadol/codeine with zopiclone as a sleeping aid and this works very well for me - most of the time. I have symptoms 24/7 in both arms and legs and I must take my meds on time, any delay and then the symptoms get a hold and it becomes a very high task for the meds to tackle.

It is very possible that when using the previous requip, sinemet, mirapex, that you in the end augmented. Them coming off them would have a nightmare with withdrawals and worsened WED symptoms.

Please read the stickies at the top of the 'Just Joined' forum.
Have you taken any information with you to your GP for discussion.
I don't see any opioids mentioned in your list of tried medications and it is something you or your doctor may wish to consider. Manydoctors are not happy prescribing these, many sufferers are not happy about using them.
I would be non functioning and very emotionally unwell without opoids

In the interim have you tried hot showers/bath , or the complete opposite which is icy cold water on your legs. It can give enough relief to let you get to sleep.
I don't sleep well which is a kick back from medications that are 'alerting' and perhaps an inbred insomnia over the years.
It is after 3am in the morning here in the UK and suffice to say that I am weary and exausted from lack of sleep but not sleepy. However, I am symptoms free (at present).
I will go to bed at about 4 and should get to sleep ok, that is my usual pattern.

Have no fears about using the Message Board, it is our haven when we want to stamp our feet and kick the furniture. Even want to kick hubby because he is 'daring to sleep'.
If something is posted in a wrong forum one of the moderators will move it.

[mscarrie]

Polar Bear,
Thank you so much for your reply as well as ideas on what could help me. I have had my iron levels check often, but I have never asked what the number was! I will call dr. office and ask them this. My labs should all be on file. One of the medications I neglected to mention was methadone. I became very nauseous with this, so I did not even have enough time on it to see if it would help.

One thing I do remember is that this last round where my RLS really flared up was after I discontinued Lorazapam. I had been on 2mg for about 3-4 years for anxiety. I wonder if maybe the Lorazapam was helping to keep it at bay?

Also, I am one of those sufferers who prefers not to take opioids unless necessary, only because I need to be clear-headed as I have my grandkids quite often, and if I were to get in a car accident, I could be cited for Driving Under the Influence, lose my license and possibly even go to jail!

I do believe I suffered from augmentation, but the Dr. said he did not think it was possible as I had not been on any one of those medications for more than 3-4 months...he said I would need to have been on them for at least a year to have that problem. He really is a fantastic neurologist, and he has gone out of his way to try and help me. He just is not as aware of the side effects of some of the medications.

I also must say, I have never really talked to anyone else who has suffered this badly until reading your story, and others on the message board. I feel very badly that I thought I had it the worst, when in fact there are many of us who are suffering a great deal. It has certainly disrupted my life, the quality of my life, and a very large part of my recent divorce. I wish this disorder would be taken more seriously, as it really can and does ruin lives.

I am so glad I found this site, and I hope I can continue to become more educated and also, to connect with others like you who understand just how awful WED/RLS really is. Thank you so much.

[ViewsAskew]

Forgive me if I back up a bit and if I ask some things you may think crazy....I'll explain why at the end.

1. Does movement help you all the times that you have symptoms?

2. If you move when you have symptoms, why do you move? I know this sounds silly, but it's really important.

3. What are you doing when symptoms start? You mentioned morning, afternoon, and evening - does it happen differently based on time of day?

4. What does help?

5. When you say that doctors aren't sure all your symptoms are WED/RLS, what reasons do they give?

It's very possible that it IS more than one thing. Many of us have multiple issues and they can be very hard to tease apart. One of our members just realized, after a few years, that while he does have WED, his morning symptoms are NOT WED. He realized it based on some really subtle differences. He's had this for years - we can sometimes miss very slight differences.

A few comments...

First, I'm so sorry that this is so miserable for you. I wish I never had to hear a story like yours every again. It's the same story of so many of us and it's just so sad - not so much that it happens - disease happens. But, that we have to go through so much to find help and that doctors often can't help us. I do hope that it gets better and soon. I've been close to suicide myself over this (though primarily caused by drugs, the depression is awful no matter the cause) and I commiserate with you.

Second, your neurologist is absolutely wrong about augmentation - my guess is that he doesn't have a large practice and/or isn't as up to date on the medical literature as he should be. You CAN augment very quickly - and based on your story, I think you did. I augmented within a week the first time. I stayed on the DA for almost 18 months (due to a stupid doctor) and ended up taking much, too much of it! It's uncommon to augment in short periods, but it does happen. And, if you augment once, the chances that you augment again are very high - some doctors say that if you augment twice, you should never take a DA again. BUT, it's very possible that you could use a dopamine agonist again, as long as you alternated it and never took it for a long time without switching it. If they stop working in 2-3 months and then you need to start increasing, maybe you could take it for 2-4 weeks, take an opioid for a week, then start the DA again. Or, take it 5 days, take an opioid for 2 days, then go back to the DA. As I mentioned, I augment in about a week, then augmented on two other dopaminergics in 2004/2005, but I used pramipexole and methadone for almost 3 years - from 2009 until 2012. I first took each one for 2 days, then switched. Eventually I started alternating daily to better manage side effects. It ultimately didn't work because pramipexole causes depression for me, but it worked for the symptoms perfectly and I'd still be doing it if not for the depression.

In terms of opioids, they may be necessary. They are considered appropriate therapy for WED and the ONLY alternative available if other drugs do not work. If you use them occasionally, you can manage your schedule, too, so you could make sure you don't have the grandkids on those days. That said, it may not be necessary. I use methadone daily and I drive, work, and so on. The doses we take are often relatively low and most of us here say that we notice no high, no drowsiness (in fact, many of us find them energizing), and no impairment. In terms of nausea, there are ways to manage it.

Per iron, make sure you get the serum ferritin results - it concerns me that your doctor has not shared the results with you or talked to you about it. Given some other things you've said, it may be that you could use a different doctor - of course, I do not know him and have heard only bits.

Serum ferritin, for someone without WED, can be as low as 10 to 20 without issue. But, those of us with WED need to have higher - much much higher - levels. In reviewing studies, they've realized that people with serum ferritin 100 or higher when they start taking a dopamine agonist rarely augment. But, the lower it is below 100, the more likely to augment. Some doctors say that getting it to 50 is enough, but some doctors are saying that, depending on the person, it may need to be 200 or even higher. If you like reading medical studies, reading about the work done at Johns Hopkins on ferritin and iron infusions - work done by Drs Earley and Allen, among others.

Very helpful might be to order the book, The Clinical Management of Restless Legs Syndrome, Second Edition, by Lee, Buchfuhrer, Allen, and Hening. Many of us use this to take to our doctors - or buy two copies and give one to our doctors, especially if they seem not to be fully up to date. A neurologist might be a bit annoyed by that, lol, but family doctors are usually grateful.

Sorry for the novella ! Hope this is helpful.

[mscarrie]

ViewsAskew,

I am so very happy I found this site, and am truly grateful I have found a place where people are so helpful and supportive.
I am going to answer each question asked, and see what you think.

1. Does movement help you all the times that you have symptoms? Movement ALWAYS helps, and if I cannot move as in a car or plane, etc., I am forced (cannot stop it) to jerk, stomp, squirm like crazy and so on.

2. If you move when you have symptoms, why do you move? I know this sounds silly, but it's really important. I move because if I don't, my legs will start to jerk and I just cannot NOT move.

3. What are you doing when symptoms start? You mentioned morning, afternoon, and evening - does it happen differently based on time of day? Often times, it is when I am at my computer, or watching tv. Even sitting down for a meal. Sometimes, it occurs hours after I have been swimming. And sometimes, I don't even know what I was doing.

4. What does help? Sounds stupid, but the only 3 things that help (without meds) is stretching, walking, and actually punching the part of the body that is causing the severe discomfort. I have to put as much force as I can muster into hitting the area, or when rubbing the bottoms of my feet, especially in the arch. When it is my hamstrings, I have to sit on a ledge of something hard and push my thigh as hard as I can onto the edge of that surface. I know that must sound very odd. Unfortunately, all of these things only work WHILE I am actually doing them. As soon as I stop, its back. Medication wise, most everything I have tried has worked, but only for a short period of time, and then I am back to the misery.

5. When you say that doctors aren't sure all your symptoms are WED/RLS, what reasons do they give? What I am told is that if it were RLS, I would not have symptoms that high up on my legs/hips/buttocks and also, RLS only happens in the evening and night, not morning/afternoon, and not for that long of a period.

I am looking forward to what you think about all this. Thank you so much.

mscarrie

[Polar Bear]

Views has asked you questions and will be back to see your answers.

In the meantime !!! None of what you say sounds stupid.
What does sound stupid is that the dr says that symptoms cannot occur that high up your legs, or that it only happens at night, or that it cannot last that long.
WED/RLS can occur 24/7 (that's me), it can be felt in various parts of the body (both my arms and both of my legs).

I agree with Views that you should consider buying the book. It is an excellent piece of kit, easy to read, and great to take along to an appointment.
Alternatively read the links in the signatures of myself, badnights, and Views. Print out what might be relevant to an appointment.
http://www.mayoclinicproceedings.org/ar ... 4/abstract
This link is extremely informative, make sure you click on the little heading 'Full Text'.

Doctors cannot always find time to be updated with current research and perhaps if you are able to show the written evidence regarding it will let your doctor consider his current opinions.

[ViewsAskew]

Thanks for not being offended with my questions . All of your answers are completely consistent with it always being WED/RLS. That said, we did have a member here - and who was seen by one of our preeminent WED doctors - who thought she only had WED, but she had both WED and small fiber neuropathy. It took her almost a year of failed treatments to figure it out. If you haven't been, just to make sure, it might make sense to be tested for neuropathy. If she hadn't been here, I'd never doubt what you are saying....but after her case, it seems to pay to be a bit more cautious, especially when treatments aren't working all that well.

The reason I asked about why you move and if moving works is because there is a very subtle difference in why we move and what it does for us when we have WED vs neuropathic symptoms. The anxiety and strong, strong urge to move is part of WED. With neuropathies, we tend to move because we're uncomfortable - we're shifting positions to see if that makes it stop. We think moving might help (and it often does). The differences are so subtle, that it's easy to mistake them for each other.

As Polar Bear noted, your doctors are absolutely WRONG that your symptoms cannot be where you said they are. Some people get these symptoms in their genitals primarily. Some get them in the back and buttocks, some in the arms more than the legs (my brother rarely has symptoms in his legs - it's always his arms). I'm lucky, I guess - mine are confined to forearms and thighs. When I first started researching symptoms, all the literature said it had to be in your calves....but my symptoms matched perfectly other than that. Many doctors have read this earlier information and aren't up to date. In the book I mentioned, it says, "The most common location is between the knee and ankle, although symptoms frequently occur above the knee....Patients with severe RLS frequently experience their RLS symptoms on other parts of the body beside the legs. Most commonly, symptoms are felt in the arms (4). Less commonly, the hips, trunk, shoulders, genitals, or anus region may be involved."

They are also wrong about time of day. They just haven't treated any severe cases - and not surprising. Of the 5-10% of us with WED, only 1-2% of us have it very severely. Many of us have tried to be treated - the average time to find treatment is several years because doctors don't know what to do with us. Back to time of day, it's always worse in the evening. If we stay on a typical circadian clock - asleep between 9 and midnight and awake by 5 to 8 AM, we find our symptoms start to abate around 3 AM and can often sleep (even if only in starts) in the early to mid morning. Your symptoms seem to primarily occur when at rest- sitting, reading, being relatively quiet. My guess is that you're tired much of the time - when I'm tired, no matter what time of day, I'm guaranteed to get symptoms -and I'm relatively medicated!

Not sure where you live - the doctors that publish, do research, and write about WED are in Southern California (Dr Buchfuhrer), Dallas/Fort Worth area (Dr Becker), Emory University (Dr Rye), Johns Hopkins (Dr's Earley, Gamaldo, and Salas), Yale (Dr Lee) and Mayo Clinic (Dr Silber). (Forgive anyone if I've forgotten someone else prominent....) There are definitely other doctors out there, but many of the severe patients find they need to see someone who sees a lot of other severe patients. I live in Chicago and haven't found anyone here - though there is someone in Champaign/Urbana - he won't see me until I'm in his office regularly and I can't handle driving there often. I fly to So Cal every year and then work with my doc through email/phone to tweak and make changes. Another of our members lives on the West Coast and sees a doctor at Johns Hopkins. It's a wonderful thing to see someone who TOTALLY understands you and believes you .

[mscarrie]

Hi. I am so glad to have received so much good information and good questions. I wanted to let you know what I found out about my iron levels, and get your feedback. The last level the dr. office could find was from 2012, and my level was 67 with a reference range of 28 - 170. I asked to have a new level done, because of what I learned here. I just got the results a few minutes ago. I was only at 50 with the same reference range! I am thinking that means I am on the VERY low end of normal? I see my doc tomorrow. Advice? And thank you so much!

[ViewsAskew]

Hi. I am so glad to have received so much good information and good questions. I wanted to let you know what I found out about my iron levels, and get your feedback. The last level the dr. office could find was from 2012, and my level was 67 with a reference range of 28 - 170. I asked to have a new level done, because of what I learned here. I just got the results a few minutes ago. I was only at 50 with the same reference range! I am thinking that means I am on the VERY low end of normal? I see my doc tomorrow. Advice? And thank you so much!

Great news that they were willing to run the test again!

The difficult concept here, I think, is that there isn't one normal for all of us. One of us might need our ferritin at 79 to keep WED at bay. Another might need it to be 125, and yet another might need 300.

The only way to tell is to take a reading and then get an infusion. Take a reading after and see if symptoms are gone or reduced. For up to 70% symptoms are reduced or eliminated when they find *their* minimum.

But, to convince a doctor of that when this really is cutting edge info in our field is another issue!!!!!

The best I can advise is that several publications now say 100 ferritin is minimum when you use dopamine agonists and that this MAY prevent augmentation. Since you are at 50, it's very possible the problems you had with DAs are related to lower ferritin and that you would like to try increasing your iron to see if it helps, A. reduce symptoms, and B. prevent problems with a DA.

Often I say something like, "From the WED Foundation, I heard this unbelievable information about ferritin levels and work by a doctor at Johns Hopkins. His name was Earley. Have you heard of this? I was excited about it, but would love to get your take." If he's worth it, he'll bite and ask you for more information. He has the resources to review the medical literature related to the studies and read them. If you have time, you can find a few and mention the journals they are in. I'd search for you, but I'm exhausted....I just put in "Johns hopkins RLS ferritin" in Google and found things immediately, including the JH site itself, http://www.hopkinsmedicine.org/neurolog ... .html#iron - that takes about iron and what to do.

For what it's worth, I rarely mention this forum specifically - I just say I heard about it from The WED Foundation's information. That's technically correct as we are part of the main website . Doctors don't like discussion boards - but they will usually listen if they feel it's from science-based organization that works to combat the disease.

[mscarrie]

Well, met with my neuro. Asked him if maybe I might benefit from taking iron, citing reputable information from different studies being done. He was not at all interested in listening to me. I was very careful to just mention what I had read and where. I did not want him thinking I was trying to play doctor. So, basically he just said that if I wanted to take an iron supplement, it did not matter to him, but that is as far as he would go. Then he wrote me an Rx for Mirapex at a low dose as he weans me off the Sinemet. I also have methadone. I have no way of knowing how much iron I need to take a day to build up to a good level. I don't want to make myself sick(er). I know it is going to take a long time to do it this way, and I doubt very much my medication will help that far into the future. I have read it could take up to two months. So I do not know where to go from here. Unfortunately, I live in a fairly small town. I am only 1/2 hour from Columbus, Ohio where there are lots of other neurologists, but I do not have the ability to get there. My car does good just to get around this town, lol. I am just not sure where to go from here? Thank you so much for listening.

[ViewsAskew]

Do you have a family doctor/GP you trust? When I was in a similar situation, I found my GP to be my savior. He actually read the articles I brought to him and ordered the necessary tests.

You likely need a physical this year and most insurance covers one. If the GP will add this one test for ferritin in addition to the normal tests for bloodwork, you'll know where you are.

As to how long....could be up to 6-9 months if you're very low and you take 3 tabs a day. Some of us can't tolerate that.

Next option - any other neurologists to choose from?

I feel for you - and am angry for you. Many too many of us have been (and continue to be) in this position. It seems we need some kind of a patient advocacy group to stand up for us in situations like this.

[mscarrie]

ViewsAskew, I never even thought about talking to my regular family dr. It just did not occur to me. Yes, she is absolutely wonderful, very up on her game, and open to all kinds of ideas. She is a newbie, but that is why I chose her - she has more "updated" knowledge, and is always eager to learn more. Wow, I am so glad you mentioned this! There are only 2 other Neuro's within driving distance. One refused to take my case after having my records sent for him to evaluate. The other one, bless him, his accent is so thick that I never understood him, and I know he had no idea the things I was trying to tell him. That is who I went to first! I will call GP tomorrow and go from there. Thank you SO much!

[ViewsAskew]

You are welcome and I hope it helps.

I went with a few appropriate articles - highlighted the sections - and asked for help. My GP was great. He managed my case for several years - he even worked with Dr Buchfuhrer. Hope yours turns out to be the same.

I recently had to change GPs - I meet her in a few weeks. I also chose someone very young for the same reasons. Hope she works out as well for me as yours is working out for you.

[Polar Bear]

My GP has also been my saviour, I wasted my time with the neurologist. GP is willing to learn and read documentation.
Good luck

[Rustsmith]

I am currently on iron supplements and the only guidance that I got from my sleep neurologist was a scribbled note on my blood work results that said "start Fe supplements". Since that time, my GP has reviewed what I am doing and agreed with my approach. I am not certain yet, but I think that he is more knowledgeable about WED treatments than the neurologist.

The standard iron supplement pill is the equivalent of 65 mg of iron. Each pill should be taken on an empty stomach and is best absorbed if taken with at least 200mg of vitamin C. Since it needs to be taken on an empty stomach, that pretty much limits you to mid-morning and mid-afternoon. You should also be advised that these pills can be a bit hard on your stomach. I wouldn't describe my experience as an upset, but more like an appetite suppression that takes at least an hour to go away. I also have described myself as having a cast iron stomach, so you could experience more difficulties.

Finally, there is no discrete way to describe this final effect. The iron pills change the color of your bowel movements to a very dark color. If you are susceptible to intestinal bleeding, this could be a problem since the iron can obscure the presence any bleeding events.