New Member

[mauekat]

Hi everyone.

I don't suffer with rls but my boyfriend (Dean) has for the last 5 years. The resulting fatigue has caused him significant cognitive issues and cost him his 28 year career as a police officer.

Because of his cognitive difficulties, I've become his eyes, ears and mouth with physicians so I try to stay educated on this rotten condition.

Last week, Dean wound up in the hospital after 13 days solid with no sleep. His rls and plmd seemed to go into overdrive and involve his entire body. We went to the ER 4 times in 5 days and kept getting told that the ER is no place for rls and they couldn't help. Finally, one of the ER docs saw how violently his body was convulsing and insisted he be monitored and checked for epilepsy. I kept telling them that this was no seizure, just rls and plmd, but no one would listen. I guess they thought that he had been having seizures every night all night for the last 5 years - geniuses.

I've been reading some of the posts and had some questions and comments:

1 - Dean was on Clonazepam (klonopin) early on and became so foggy and confused, there were days he couldn't write his name much less do his job. He was checked for brain tumors, stroke and tested for alzheimers. Finally, our alzheimers dr. had him pulled off of klonopin and he immediately improved. He still has significant problems due to lost sleep but the klonopin made it 3x worse. Be careful if you're on klonopin.

2 - Mirapex and Requip stopped working for him months ago. We're constantly looking for non-pharm remedies.

3 - Not to bring up a sore spot with everyone, but this oil that you all fought about, I'm curious about. I heard from someone else that oil of oregano that is heated and applied to the lower back will help. Is this the same thing as the oil mentioned on the site, or is this different? Has anyone tried the oil of oregano?

4 - I too have wondered if it would help Dean's symptoms if I were able to get the inflatable sock that hospitals use to stop embolisms. After reading your posts, I ran to the pharmacy and bought a $30 surgical sock, but it doesn't seem to be stopping the jumping. Does anyone know about the ones that inflate (where to get them, what are they called, what do they cost?)

5 - Dean currently sees the chiropractor and massage therapist 3x per week. We have seen some improvement...I'll keep you posted.

Thanks for this forum. I hope to one day read on here about the cure for this illness.

[ctravel12]

Hi Mauekat and welcome to this group. I am so sorry about your bf having such a rough time with his rls and plmd. You are certainly an inspiration to everyone as being there for him during the roughest part of his ife.

Do you have a neurologist in your area that has knowledge about rls and plmd?

Being new to the this site go to the forum New to RLS "Mananging RLS" as there is an excellent article from the Mayo Clinic Algorithm. It is definitely well worth reading and if you are able to print it out and bring it to his dr. Another good site to read is www.rlshelp.org

I hope that he finds the right meds that works for him. I know that what works for one may not work for someone else. He may have to go through a cocktail of meds before he will find out what will work for him.

Being sleep deprived is one of the most miserable thing that anyone can go through. It is a very lonely road and believe me we all have been there so I can definitely sympathize with him.

Please keep us posted as how he is doing. I am also so sorry about losing his 28 yr career as a police officer.

One other thing too, do you have a rls support group in your area? There may be some info there that could help him and they may also know of a good dr that has rls knowledge Just food for thought.

[Sojourner]

Mauekat, Charlene gave you good starter advice. Just wanted to add my welcome. Dean is lucky to have you and "family" support is any important part of rls treatment. We are all family here. Please extend our best wishes to Dean. Don't know the breakdowm of males/females on the board but I think the males are outnumbered. Sooo, if he is so inclined, please tell Dean we could use the help!

I think if you google "inflatable socks" you will find some links.

[ViewsAskew]

Hi everyone.


2 - Mirapex and Requip stopped working for him months ago. We're constantly looking for non-pharm remedies.

3 - Not to bring up a sore spot with everyone, but this oil that you all fought about, I'm curious about. I heard from someone else that oil of oregano that is heated and applied to the lower back will help. Is this the same thing as the oil mentioned on the site, or is this different? Has anyone tried the oil of oregano?

4 - I too have wondered if it would help Dean's symptoms if I were able to get the inflatable sock that hospitals use to stop embolisms. After reading your posts, I ran to the pharmacy and bought a $30 surgical sock, but it doesn't seem to be stopping the jumping. Does anyone know about the ones that inflate (where to get them, what are they called, what do they cost?)

Thanks for this forum. I hope to one day read on here about the cure for this illness.

Welcome to the group.

Per the socks, you could also try the medical grade compression stockings. Works a charm on those who like pressure. For those who pressure sets off the RLS. . .different story, lol.

Per the oil, any Google search for "RLS oil" will bring the oil up immediately. Please, don't feel that you shouldn't ask. . .

Per non-pharm and severe RLS. . .well, just my take, but it's a hard row to hoe and may not work. But, if he can handle trying things and not getting relief, go for it. Massage may help a lot. Make sure he checks his ferritin immediately. Also, read all the posts in this section - there are probably a hundred ideas. Do they work everytime for everyone? Nope. Some may not really work at all. But, who knows? For example, the L-tyrosine posts clearly show that it works for some people, but it also doesn't work for others. It may work for him.

Lastly, per the Requip and Mirapex - those are only two drugs out of 20-30 that can be used. When people have severe RLS, one drug usually doesn't work anyway. It seems that a cocktail of two, three, four drugs at smaller doses works much better than just one drug. That said, my RLS is pretty severe and I take one drug - methadone. If the DAs don't work and the benzos are out, you still have the antiseizure and the opioids.

Hope you find what you need. . .and send Dean on over. The guys would love to have another male to bond with

[mauekat]

Aren't you concerned about methadone addiction? They've mentioned it for Dean and I'm not comfortable with him taking it.

[SquirmingSusan]

Hi Mauekat, and welcome to this forum. I'm so sorry your boyfriend is suffering to terribly with this condition.

I've meant to post earlier to welcome you, but this question caught my eye. I am also on methadone, because all other meds have failed for me. And no, I'm not the least bit concerned about methadone addiction. Methadone is a very old, safe medication, that is a bit different from other opioids. When I was taking Vicodin, I built tolerance to it amazingly fast. Even over a period of a couple months, my dose quadrupled.

People don't build tolerance nearly as quickly with methadone as with other opioids. Often the same dose will work for years. And there isn't a buzz with it to encourage someone to take more then necessary for symptom control. The only thing I notice when I take it is much less pain and no RLS.

The other thing I like about methadone versus the hydrocodone, is that methadone doesn't keep me awake like the hydrocodone.

Really, the whole addiction thing with opioids is overblown. Yes, it is possible to become addicted to substances, but addiction is a psychological problem, not a physical problem. So, if a person has an addictive personality, it's possible. But when used to treat pain or RLS, only something like 7% of patients get addicted.

Dependence is another issue. That is when the body adjusts to the dose and it no longer works, and the dose must be increased. That happens with all the opioids, but less with methadone. It's not really a problem unless you think it is, IMO.

At some point you have to ask the question of which you prefer - having symptoms that make you a total zombie, lose your job, possibly your relationships, etc. OR take a very safe medication (that has some stigma attached to it) and get your life back.

It was an easy choice for me. At least for now. There may be better options in the future, but I can't imagine a medication with less side effects for me.

Susan

[ViewsAskew]

Aren't you concerned about methadone addiction? They've mentioned it for Dean and I'm not comfortable with him taking it.

Ditto what Susan said.

Of all the opioids, this is one of the ones the most studied. It's extraordinarily safe when taken safely. Heavens, it's one of the only drugs that treats RLS effectively that is safe in pregnancy.

As Susan said, addiction and dependence are overblown. I am NOT sayign there is no risk. But, to me, I'd take this anyday before taking many other drugs out there, including the benzos.

In one study, some people were on methadone for 17 years for RLS with no dose increases. According to discussions I've had with Dr Buchfurer, an expert on RLS, methadone has few if any complications. He successfully uses it with many patients, as he freely posts on www.rlshelp.org.

I've been on it for over 2 years. Is my life perfect? Nope. But, I will never have the life I had before severe RLS and severe PLMD hit. I used to manage it non-pharm. For 20 years I did fine. But, not anymore. I spent almost 2 years going through the worst time, trying to find solutions. Like Dean, I lost my job (I am self-employed, but I lost customers and had a time where I couldn't get any new ones).

Now? I work about a 55-80 percent work week most weeks. Not sure I could work full time, but I can work. . .and I couldn't for awhile. I lost cognitive function during those two years. I won't ever get that back. But, not I do pretty good with what I have left. And, I don't feel I'm losing ground. My RLS is under control about 90% of the time and I have about 80% of my functioning back. I have both my consulting business and a stained glass business, I volunteer as a mediator and I volunteer training new mediators. I manage to go out occasionally (something I couldn't do before) and have a life. It's not the life I envisioned having. . .but it sure beats the life I didn't have when RLS/PLMD claimed me and my prior long-term relationship.

[KBear]

Yes, it is possible to become addicted to substances, but addiction is a psychological problem, not a physical problem. So, if a person has an addictive personality, it's possible. But when used to treat pain or RLS, only something like 7% of patients get addicted.

Susan-Sorry but I have to correct you here. Addiction is not just a psychological problem. There are MANY drugs that can lead physical addiction and that result in painful physical withdrawal symptoms when the drug is stopped. This is not limited to drugs that make you "high". Antidepressants can cause physical dependency and painful withdrawal symptoms when you stop taking them. There may also be psychological aspects to addiction but you can't discount the physical aspects. It's like a slap in the face to anyone who has had to go through the pain of withdrawal from "prescribed" drugs.

However I do agree that pain management is important and that many people need these drugs to have a decent quality of life. From what I've read methadone is one of those that does not result in addiction. That's why they give it to herion addicts to manage withdrawal pain. I think this is why it gets a bad wrap which is too bad since it seems to work so well for many people with RLS.

[ViewsAskew]

I think it's really easy to get confused between the addiction and dependence. The media do not always portray them correctly and the difference between them is fine and not always clear. So, this post is to really clarify the definitions of each, not to weigh in on what's already been posted or to dis anyone in anyway.

Dependence can be physical or emotional. Physical is what most of us encounter - almost every drug that is prescribed for RLS causes physical dependence: that means that when we stop it, we go through withdrawal of some kind. This is NOT addiction. Our bodies are used to it and they require it. You know there is a risk for physical dependence when the doctor tells you not to stop the drug suddenly.

But, dependence can also be emotional. For example, someone who posted recently said her husband is afraid he won't ever sleep if he stops Mirapex. He is emotionally dependent on his drugs.

Addiction is another step in this, however. Addiction is when we actively seek out drugs to make us feel a particular way and usually escalate the amount we take. This is when we lie to our doctor and tell him we lost our script, when we didn't. Or go to several doctors and different pharmacies, maybe under different names. Or score street drugs or Internet drugs.

The confusion is that addiction almost always has the component of dependence, but dependence can occur independently of addiction. . .and does much more frequently than people get addicted. As Susan said, addiction occurs in only about 7% of cases. Dependence occurs in 100% of some drugs (much less in others). In benzos, for example, addiction is still 7% and dependence is about 50%.

It's really important that we don't confuse these issues.

It sucks to be physically dependent on a drug. I've been there. It took me 7 to 8 months to get off of clonazepam and entailed vomiting, the chills, loss of appetitite, screwed up sleeping (what else is new?), etc. But, I never wanted to take extra of it. I never didn't want to stop it. My body had gotten used to it. I was not addicted, I was dependent.

If I'd been addicted when I stopped it, I'd still have had the withdrawal to go through and that part would have been identical. But, because I wasn't addicted, I didn't have emotional withdrawal and counseling and the fight with myself about making the decision, and all the rest.

It seems to me that doctors don't tell us the difference. And it is unfair that many of us are in for horrid withdrawals (such as from Paxil, which can take YEARS to get off of) and we were never told that could happen. There needs to be more accurate talk about the difference between the two. As Kathy said, it can really be horrid to end dependence and most of us don't know what we're in for.

In terms of methadone, the dependence is minimal when you are taking it for RLS. I have asked the doctor point blank about this when I was at the RLS conference. They told me that because we usually only take it once a day and at small amounts, that withdrawal is usually not a big deal. However, it isn't always like that. If you take it three times a day, you're in for a much longer withdrawal. Most of us don't. In the time I've been on these forums, I've only seen one person who took it more than once a day - and it didn't work very well for her. Those of us it works well for take it once. So, we don't have the level of dependence.

Hope that is as clear as mud!

[mauekat]

OK, so you can read Dean's story above in my first posting. He has made tremendous progress since June.

He started receiving chiropractic care in March. Our chiropractor told us that he believed he could help us but that it would take a while, and that it may get worse before it gets better. When Dean lost his job, the chiropractor even waived the fees in order to ensure that he continued to receive treatment. I knew that he really wanted to help and wasn't just selling his services when he did that.

Anyway, I am happy to report that since Dean's hospitalization in June, he has slept consistently through the night, almost every single night. The nights that he hasn't slept well have not been because of rls, but because he lies awake worrying about things.

Since he's started sleeping again, he has made very minor, but very noticeable improvement in his cognitive function. He's able to do small things that he couldn't do a few months ago (open a combination lock, some problem solving abilities have returned, he can understand instructions a little better) and his mood has improved.

When he was in the midst of the 13 days with no sleep, he was on 3 mirapex per evening, which did nothing. Now, he takes one before bed, only if his legs are jumpy.

Let me explain something... Our chiropractor did a nerve scan on Dean in March, which showed some unhealthy nerve activity in his upper neck and a little in his lower back. After treatments 3 times a week for 3 months, the next nerve scan showed a lot of unhealthy nerve activity in his lower back, which is the area that controls your legs. That was about the time Dean went into the hospital with the violent rls episode. The last nerve scan about a month ago, showed no unhealthy nerve activity anywhere in his back. I believe that this pattern follows what the dr told us about things getting worse before they get better.

His treatments were 3x a week for about 4-5 months (remember, he had very severe rls) and then 2x a week for a month. Now he's down to once a week. The treatments were an adjustment with the chiropractor, 30 min deep tissue massage on his legs with the massage therapist, and 10 minutes on the traction table.

Another difference - like it or not, we started to pray. We gave God control of the situation and literally, over night, Dean started to sleep. Take what you want out of that part, but God is real and I'm so grateful for the progress Dean has made.

I know that different things work for different people, but the problem with chiropractic care is that it's a long-term treatment. You can't go once or twice and expect to see it work right away. Also, I know many insurance plans won't cover it. Third, you need to make sure that you get a chiropractor that understands rls and how to treat it. Our dr seems to believe that it's somehow associated with pinched nerves in your spine.

Whatever...I just praise God for the way our lives have turned around in 2 months. Go back and read my first posting. I was devastated and didn't know what we were going to do. God's bigger than us, and he created us. He knows exactly how to get our attention so that we start to seek him out and he knows how to give us what we need. I never knew it could be so incredibly sweet to watch someone sleep. Watching Dean sleep deep, restful sleep is one of the biggest blessings in my life now.

God bless you all in your search for treatments and rest.