Symptoms worsening - HELP!

[Nightwalker53]

I have suffered from Wed for 12 years. My symptoms are worsening. My medications I take are clonazepam 2mg at bedtime which I now have to take 3 to sleep at all. I also take Temazepam 30 mg which lets me sleep 2-3 hours then the night walking begins. My grandfather and mother suffered so much and all I remember them doing at night is walking.I just lost my twin sister to an aneurysm and grandson two weeks prior to his birth. I am on Zoloft and a mood elevator (sad to read these can worsen symptoms)
I am unable to take asprin NSAIDS Ibuprophen. I am very sensative to medications.My pcp did not like me taking so much clonazepam so sent me to a neurologist and i felt like a guinea pig. He tried so many meds, I was either up all night agitated or seeing parakeets not to mention terrible nausea. Finally I told my pcp that I had to go back to the clonazepam and temazepam. I had such a hard time trying other medications. I cannot take Vicodin or tramadol. I can only take percocet with no asprin.I dont have a lot of choices and I do not want to get addicted to percocet.

I take on average three baths per night to soak my legs.

This is horrible I am always tired if I take a nap I cant sleep at night! I am at the point I would rather not have legs. I hate night time. So glad to have found the foundation.
HELP!!
Sleepless in Seattle

[ViewsAskew]

We can support you, give you virtual hugs. In terms of being sensitive, there isn't anything we can do except empathize. Many of us find we are either a bit to a lot more sensitive that others, or that medications don't work the same for us as they do for others. Most of us find we either give up because trying them is difficult, or that we suffer through trying. It's really all we can do.

And, so sorry to hear about your losses. You must be devastated.

I am not so much sensitive as medications always have different side effects than expected. A medication that helps pain gives me migraines, for example. One that puts people to sleep makes me jittery and keeps me up all night. Only saying this to say that I commiserate with how hard this can be.

If Percocet works, is there any other reason to keep trying? You are unlikely to have addiction issues (it's an interesting part of WED/RLS), though you may become physically dependent and you might get tolerance (need to increase over time). Another option is to take it 5 days a week, and not take it on the weekends. Then you will not get tolerance or dependence.

If you decide to try some meds, my advice is to take about 1/8th of the expected dose and spend a full week getting used to it before you increase it by a tiny amount. It may take you a lot longer to get to the right dose, but it will likely be much easier for you.

[rthom]

Sleepless...

Have you had a sleep study done? I wonder if there is something else going on as well. I also cannot sleep at night if I've slept during the day, at all, but this is due to another thing not the WED.
Just a thought.

[Polar Bear]

Nightwalker = you have been through such a terrible time. Stress is also an aggravator or a trigger for WED.
And yes a mood elevator can have a negative effect on our symptoms but the chances of this happening are actually considered quite low, many of us are on an anti depressant.

Have you had an iron ferritin serum level check.
Iron levels can be a part of the condition. An ordinary blood test may show your iron levels as ok but it is your serum ferritin levels that need to be checked. Doctors often reckon that a ferritin level of 20 is normal but for us rls/wed sufferers ferritin should be at least 100. This test is not done as a matter of course when having bloods done and you should specifically ask that your ferritin is checked. Ferritin levels tell us what iron is stored in our brain, rather than the iron that is flowing in our blood.

Make sure that none of your current medication is aggravating your rls, such as anti-depressants, benedryl, antihistamines, anti nauseants, also alcohol and nicotine.

There is a great deal of information throughout the site and indeed I was desperate when I found this group. The information led me to treatment and to some semblance of normality.......

You have said that Perecot works. If it worked for me I would not be concerned about addiction. Addiction is when you take a drug for the high it gives you.
If you are afraid of becoming dependent on Perecot..... consider it the same as how a diabetic would be dependent on insulin.

[debbluebird]

We all understand about how you are feeling. I hate to be a person of bad news, but Clonazepam and Temazepam are benzodiazepines. I believe that they are worse than opioids, especially with withdrawal of them and more addicting. I agree with the others, that opioids aren't really addicting unless you are taking them for a high. We take lower doses. We also tend to take as little as possible. It's also better to take the opioid without the Aspirin or Tylenol anyway. Plus your antidepressant might be making your WED worse as you just found out.
I'm sure that the information found on this site will help you decide what to do.

[Nightwalker53]

Thank you all for responding. I have emailed my doctor to have my lab work done as well as a sleep study. I have to have IV ferratin as my tummy cannot tolerate iron so I go through about 3 IV bags of the ferritin I have to have these about every six months. Labs will be done next week. Don't smoke, drink or drink coffee as symptoms worsened.I am not working due to my recent losses in my family but will need to work within a few months. I am concerned about drug testing. Do I put down I am disabled due to my RLS as being a nurse I know that the benzodiazephines will show up on a drug test as well as if I took Percocet. My doctor wrote me a letter however, prospective employers may not accept that it is in my urine. I consider this a disabling disease I am so impacted by this so, am I truly disabled and, should I put that on my resume?
Thanks,
I do not feel so lonely anymore.Bless your hearts, this is a terrible thing to have.
Nightwalker53

[rthom]

I wonder if we have any HR people on here--from large USA companies, that might better inform us about how the testing is handled after it's done and how likely it is to impact folks strongly at work. Or maybe someone knows someone else that can help?
NW
Wish I could be of help but I just don't have any knowledge---good luck with it.

[ViewsAskew]

Nightwalker53, I went through the drug testing issues a few months ago. I found the following:

1. Each company has their own rules unless they conform to a union or a particular set of rules for an industry. So, some companies may test for only illegal substances. Others may test for legal ones, but what they test for varies. So, they may or may not see opioids or benzos.

2. Each company has their own rules about what they do if a person tests positive for a legal substance. If you work for a factory, for example, you might be fired for opioid use, even with a prescription because it can impair your reactions - not a good thing with dangerous machinery. For other companies, if the test for them, you have to produce a valid prescription if you test positive. If you do, you are fine.

3. Once you are hired, you are protected against wrongful termination (in the US) if you have a an illness. You get your doctor to write an accommodation letter and its kept on file. BUT - while it's illegal to discriminate according to the ADA, it happens all the time. If your disability is not seen, I often see advice to say nothing until hired. While it's illegal, it's not always easy to prove.

http://www.eeoc.gov/facts/ada18.html
http://www.osd.ucla.edu/docs/Articles/d ... rocess.htm
http://www.dummies.com/how-to/content/r ... ities.html

[Polar Bear]

I am now retired.
While working full time - with little sleep, sometimes no sleep, and with legs jittering and doing my head in for most of 24/7 until I found the best medication and dosage - I didn't consider that I was disabled. But now that you mention it, I reckon that there are people who are certified disabled for something that is less intrusive than WED symptoms.
Please excuse my wording, I do not mean to make less of anyone who is certified disabled.... the point is that perhaps some of us deserve to be considered within the same category.

[badnights]

I consider this a disabling disease I am so impacted by this so, am I truly disabled and, should I put that on my resume?

It is definitely a disabling disease for some of us. I would recommend never to put it on your resume, nor to bring it up in an interview. If and only if you are offered a job, and decide to accept, then it becomes time to speak - only if your disability will affect your ability to perform the work. If it won't affect your ability, you are under no moral or other obligation to tell anyone anything about it. It it will affect you, you say you have a sensori-motor disorder that impacts your energy levels... or whatever. Say only how it will affect your job performance, nothing else.

But why are you talking about urine tests and resumes? Are you going to have to find a new job? I thought you were taking time off, and could go back?

I agree with debbluebird, you're on a pretty high dose of benzos. Benzos don't address the sensory symptoms of WED/RLS, but if there is enough in your system, they can help you sleep despite the sensations. The problem is that those sensations typically get worse with age, and you have already passed the upper recommended limit of use, yet the symptoms are not even being addressed.

There is a great social fear of opioids right now, which is a shame for those of us with WED who could benefit from the drugs. People have naturally occuring opioids in their bodies (endogenous opioids). People with WED/RLS have 30-40% less natural opioids in parts of our brains than non-WED people. So it's not surprising that we benefit from them.

There is also a peculiar similarity between WED/RLS symptoms and opioid withdrrawal - which makes me wonder if we are not going through withdrawal every day of our lives when untreated, and the opioid we take is just bringing us up to the levels most people have naturally. It is nowhere near that simple, of course, because iron and dopamine and histamine and lord knows what else is involved....

There was a study of addiction rates that showed WED paitents on long-term opioid meds are less likely to be addicted than cancer-pain patients, who are less likely to be addicted than the general population. Addiction does happen, but it is very rare in WED patients taking opioids. Many of us never even feel whatever it is that drug-seekers feel.

Once you find a medication that can address the WED/RLS sensations without bad side effects, you may still need a benzo to sleep, but hopefully a lower dose. If oxycodone works, you can be thankful that there is something you can turn to when the time comes, if it has not come yet. There are also a large number of other high-potency opioids, if oxycodone is a problem; some of them are:

hydromorphone
levorphanol
morphine
oxymorphone
fentanyl
meperidine
methadone

I know you will somehow find a way to reduce or remove your symptoms and start living again. Keep believing it's possible! And keep learning as much as you can, it will help you make good decisions. Keep us posted