It's getting worse. Way worse.

For everything and anything else not covered in the other WED/RLS sections.
User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

It's getting worse. Way worse.

Postby SquirmingSusan » Sun Feb 11, 2007 4:26 am

Aarrhhggg!!! The last few nights have just been horrible. The pain, the pulling, the PLMs, the creepy crawlies. I was getting such good relief with the Vicodin, but not anymore. I started taking that after the Requip gave me augmentation, and it was so effective - only half a 5 mg. pill! Then it was half a pill, twice a night. Last night it was 2 whole pills. Tonight I've already taken a whole Vicodin, and it hasn't touched the symptoms. So I'm going to try taking another. And I'm out of my own script and into my husband's.

It's still a fairly small dose, but really! How fast can a person build tolerance, and when will it stop? It seems like I read in here somewhere that once we reach an effective dose of the opiods that it's not necessary to keep bumping the dose; that it will keep working for a long time?

And I thought this whole augmentation thing would have resolved itself by now. It's just not going away.

And I've stopped taking EVERYTHING that's known to make the RLS worse. In fact I was horrified last night to read that Zyrtec may make it worse. OK, I've been taking that. I can switch to Claritin. Or not take any antihistamines, just my Singulair. I've really done a complete washout of everything but the bare minimum meds - Just my levothroid, Singulair, Omeprazole, and the Vicodin. Nor more antidepressants; not even St. John's Wort. (And I feel like my depression is starting to normalize without the ADs. Hurray! Although I'm still grouchy.) I don't smoke, rarely drink alcohol - but did have half a glass of wine last night, and half a beer tonight. But that's never affected my RLS before... And I don't consume caffeine or sugar, or even white flour.

What is happening to me? I just want to inject novocaine into my legs or something. I see the sleep doc on Wednesday. I hope he's up to the challenge. (And that they really scheduled me with HIM, not the nurse practitioner who, when I was having that horrible augmentation, completely ignored me, and just kept talking about how we need to treat my snoring and apnea, which I clearly don't have. It says right on the sleep study that my apnea index is 4.4 (almost nonexistant) and that I don't snore!) OK, done with my rant about that...

But what the heck is going on? I just feel like I must be missing something. And at what point do I worry that I'm increasing my Vicodin too fast?

Susan, the squirming one.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Postby becat » Sun Feb 11, 2007 4:53 am

Hi Susan,
I'm sorry to hear it's not working.......We could walk miles tonight together. My legs are unhappy as well. Hopefully mine is weather related. I say with a smile knowing it's not really. :?
I am with you about sinus meds, sometimes I have to have them. But I know that I will pay.
Sounds like you've cleaned the most of the medications you can. I know that is not easy.
I know that it was such a long time before I got to have pain meds that I felt I could take.....either they made me sicker than I felt, have no effect, or, well, I can't take Advil or Tylenol products. Anyway, I had so much pain for so long that when I first got the right meds, it was just pure joy.
After I started building a tolerance I noticed that it as quick with the DAs that I saw temporary or little difference.
Now, saying that I know I'm just one of those weird cases. Morphed, as the doc calls it. I try hard not to take what I am not allowed. I'm no angel though, I do when I travel and PMS kills me.... :D others it seems as well. LOL
I was interested to know that Dr. Rye also includes thyroid as one of the things that can make RLS worse or cause secondary. I can only prove that if the transcripts are done from the web seminar he did on We Move. So if I screwed that one up, don't think I did though, cause I was shocked.
I know only a little about thyroid, my ex's did not work at all. It was hard to level that med in his body. I'm assuming that yours has been leveled. But is it possible that this is an issue for others?
I know we've talked about thyroid issues before, but so many people seem to be coming up with thyroid problems......or we simple know more like with RLS.
I hope you get the appt with the doc you need.....hope he or she is more interested in being your partner in the treatment.
Hugs Lynne

Anonymous

Postby Anonymous » Sun Feb 11, 2007 10:04 pm

--
Last edited by Anonymous on Thu Mar 29, 2007 2:44 pm, edited 1 time in total.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Postby becat » Sun Feb 11, 2007 10:16 pm

Hi Em,
I am so glad you pointed out that there is a difference and a needed check on both T3 and T4. I am having that tested with my GP in the next week to see if the accupuncturist is right.
She said that my fingernails show that I have a thyroid problem.....no half moons on my fingernails, cept for the thumbs. Interesting tid bit.
But my mom told me that you have to ask for the T3 test and that in order to get the best or fullest results, test both, not just one.
It's all sorta new to me, but interesting anyway.
About Dr. Rye's thing, We Move is suppose to send us all transcripts, but is suppose to post it on the web as well. It was interesting, but I just love him anyway. He is the only Neuro I'd likely go to see.
Hugs
Lynne

ViewsAskew
Moderator
Posts: 15795
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Postby ViewsAskew » Sun Feb 11, 2007 11:19 pm

I second that, Lynne, I'd see Dr Rye in a heartbeat.

Per the thyroid, I believe I read that the halfmoon thing is not true, but can't remembe the source, so. . .I seem to remember reading that a LOT of people don't have them. In fact, I don't think I've every had them, certainly don't now. My sister does have them, and she's hypothyroid.

For those already diagnosed, my sister struggled for several years. Her tests all said she was fine, but her hair was still falling out and really dry and she felt like &%*$. She finally got her doc to give her Armour instead of synthetic and it did the trick. It seems that some people whose T3 is a little on the low end, but still within the boundaries, benefit from natural hormones. She noticed a difference in about a week and a huge difference in about 3 weeks. Her hair stylist even noticed.

Richard Shames (MD) and Karilee Shames (RN, Ph.D) have written about thyroid - in the book Thyroid Power, they contend that some people can be low for up to 15 years or more before our current tests show problems. They stand behind the old way of testing - body temperature starting the 2nd day of a women's period for five days, using an old fashioned thermometer. If you have four or more symptoms from their chart (I have about 15) and a waking body temp below 97.4 (my average is 96.9), they would give meds. Unfortunately, most docs do not believe what they do.

I often wonder if that would make the difference in how I feel. My tests all test in the normal range, except the do get closer to the end of the range each year - just not close enough to go over, lol.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Anonymous

Postby Anonymous » Sun Feb 11, 2007 11:36 pm

..
Last edited by Anonymous on Thu Mar 29, 2007 2:44 pm, edited 1 time in total.

Anonymous

Postby Anonymous » Sun Feb 11, 2007 11:41 pm

..
Last edited by Anonymous on Thu Mar 29, 2007 2:44 pm, edited 1 time in total.

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Postby Sojourner » Mon Feb 12, 2007 4:22 am

Susan, I had a fairly steady response to Vicodin with respect to general pain for about 18 months. Generally 1 or 2 tabs worked for the pain and I rarely had to resort to increasing the dose. I went off it for a bit due to headaches but that has seemed to resolve. I was just wondering if you are taking the Vic before your symptoms start. I know that with my pain, I was much better taking them when I knew a particular activity would get me geeked. For me, it takes about an hour or so for the meds to start working on me. Don't know what it would be for you. If you haven't already, you might try taking one a bit earlier to get it in your system and then another several hours later...hopefully before the PLM's start. For me, the Vicodin did little with respect to PLM.

I'm hoping the night will go better for you and that it is just the weather.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Postby becat » Mon Feb 12, 2007 4:31 am

GREAT POINT MARK

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Postby brandy » Mon Feb 12, 2007 4:37 am

Susan, I am so sorry that you are suffering so. I know what it's like to go night after night without good sleep. It's enough to make you crazy. You are still on a low dose and it might just take some time to find the dose you need. I know with Neurontin I had to increase every three days until I got to the right dose and I haven't had to increase since then. I hope this is the case with you. And if you have to increase your dose for relief, go ahead and do it. Your sanity and quality of life is worth taking opiods for. We are with you in spirit. I pray that things improve for you.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Postby SquirmingSusan » Mon Feb 12, 2007 4:00 pm

becat wrote:Hi Susan,
I'm sorry to hear it's not working.......We could walk miles tonight together. My legs are unhappy as well. Hopefully mine is weather related. I say with a smile knowing it's not really. :?

Hugs Lynne


Thanks Lynne. I think I'm "morphed" too. Or warped. Or something. :wink: I've always blamed the weather for my aches and pains, specifically changes in the weather. In Minnesota, we don't get weather, we get samples of weather, and it's always changing. But it used to be only once or twice a month that I'd get the aching and the squirming.

This must be caused by global warming. :o

User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Postby SquirmingSusan » Mon Feb 12, 2007 4:06 pm

Make Mine Coffee wrote:Hey Susan, I hope you start feeling better. I know how scary and frustrating it must be for you to have to keep upping your dose of Vicodin. Take comfort in the fact that at least it isn't one of the super strong narcotics... even if you do have to have something stronger eventually, at least you still have options. And it may be that your rls is just acting up extra badly right now. Maybe?

I also have thyroid problems. I am hypothyroid by nature and take replacement hormones Levothyroxine (T4) and Cytomel (T3) for it. When my rls started up, I was actually being overtreated and was made HYPERthyroid for a while, and ever since then we've been lowering my dose trying to find a good middle gound. I need to have my levels checked again. I WISH my rls was secondary to thyroid. Then it might reslove or get better at least, but it seems no matter what I do with my meds it never has an effect on the rls. I am really interested to hear what Dr. Rye said about it, though.


Thanks, Emily. I know I'm just on "starter" doses of opiods, and there's a long way to go as far as treatment options. It's just that I have doctors who are so resistant to controlled substances of any kind. I've been carefully rationing my 30, 5mg Vicodins to last 6 weeks. Thankfully I have some from my husband, and from old surgeries, if I get desperate. I have a doctor appointment on Wednesday, and will talk about 24 hour treatment, because my RLS is now an all-day affair, with lots of aching pain, that may or may not be RLS, but it's been there since the Requip and is just wearing me down.

When I ordered Dr. B's book, I also ordered one called "Understanding Pain." It's also excellent, and I may just need to go to a pain clinic and find out more options. We'll see how much pain relief my RLS doc is willing to give me, and go from there.

I hope you get some relief, my dear, and that your upcoming surgery goes well.

User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Postby SquirmingSusan » Mon Feb 12, 2007 4:09 pm

Oh yeah, thyroid - mine has been up and down and crazy for the last year or two. I think it may have to do with the pharmacy switching me to generic. I'm supposedly hypo right now - TSH or 17 (not nearly the worst it's been!) but I'm feeling very energetic. Although I think I'm in a pain cycle that's making the adrenaline flow too much...

But they always check my T3 levels along with the T4, and I'm apparently not lacking in the enzyme that converts the T4 to T3. Otherwise I'd be insisting on changing to the smelly Armour stuff. "Goatoid" as my diet doctor calls it.

User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Postby SquirmingSusan » Mon Feb 12, 2007 4:15 pm

Mark wrote:Susan, I had a fairly steady response to Vicodin with respect to general pain for about 18 months. Generally 1 or 2 tabs worked for the pain and I rarely had to resort to increasing the dose. I went off it for a bit due to headaches but that has seemed to resolve. I was just wondering if you are taking the Vic before your symptoms start. I know that with my pain, I was much better taking them when I knew a particular activity would get me geeked. For me, it takes about an hour or so for the meds to start working on me. Don't know what it would be for you. If you haven't already, you might try taking one a bit earlier to get it in your system and then another several hours later...hopefully before the PLM's start. For me, the Vicodin did little with respect to PLM.

I'm hoping the night will go better for you and that it is just the weather.


That's such a good point, Mark. I realized last night while reading my new book on pain that I need to get ahead of it. It would seriously help to a prescription for ENOUGH Vicodin to do that. I'll see the doc on Wednesday, and hopefully he'll help me out. Otherwise I'll get me to a doc who specializes in pain management.

I walk around in agony all day long so I can save my 1 or 2 vicodins for bedtime, and wonder why I'm always so irritable and grouchy and borderline suicidal. (Don't worry, I'm not planning anything, my thoughts just head that way when I'm tortured by pain for a long time.)

I'm one of those people who likes to be tough and only take things when I really need it, but I'm learning that have to stay ahead of the pain, and need a doctor who will support me with that.

Susan

User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Postby SquirmingSusan » Mon Feb 12, 2007 4:16 pm

brandy wrote:Susan, I am so sorry that you are suffering so. I know what it's like to go night after night without good sleep. It's enough to make you crazy. You are still on a low dose and it might just take some time to find the dose you need. I know with Neurontin I had to increase every three days until I got to the right dose and I haven't had to increase since then. I hope this is the case with you. And if you have to increase your dose for relief, go ahead and do it. Your sanity and quality of life is worth taking opiods for. We are with you in spirit. I pray that things improve for you.


Thanks Brandy.

And thanks to all of you! I'll keep you posted.

Susan


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 8 guests