Help - Wed/PLMD affect job

[Debrasuzan]

I work full-time but am struggling due to sleep deprivation. Looking into going on permanent social security disability. Does anyone have any advice on how to apply and the key information needed from a doctor? Thanks for any ideas!

[rthom]

Debrasuzan
Sorry to hear it has gotten so bad for you. I took a quick look for a couple of folk's posts but can't remember where they are. There are a couple of folks who have gone on disabbility (or tried)--they'll post later likely. Hope you have a better day!

[debbluebird]

I went to a law firm, where, that's all they do. You can go to the social security site online and apply yourself too. Those law firms take a percentage of what you get, if you have been out of work for awhile. They didn't charge me for some reason. I'm sure most states have that info online. Also you can do searches on this site. You might find more info.

[Polar Bear]

Sorry things have become so bad for you. I am in the UK and so have no knowledge of what the criteria might be for social security disability. Debbluebird has told you that she used a law firm. If you don't want to take that route ... hopefully someone will post who is familiar with what is required.

Think I'd start with a google search for the criteria required for the state in which you are living.... perhaps you have already done this. Just to get a few basics to start and build upon.
And as debbluebird has said, some members have occasionally posted here on the site - which a search may locate.

EDIT::: i have just done a search using '' social security disability''' and this brings up threads where this has been mentioned. It may be that you will have to go through each thread individually which is likely to be laborious, but there certainly are references to be found.

[ViewsAskew]

Definitely do a search on our site for the term disability. Over the years, several people have done it and posted about it. Many of those people are no longer active here, though. To see what they went through, finding those old posts will really help you.

[Debrasuzan]

Ok - so it is 5:30 a.m. & I have been struggling all night. My legs are doing their thing making it impossible to sleep. I was trying the Neupro patch but I believe it was making my legs worse. Is that possible? I know I ripped the patch off a couple hours ago because I am so miserable. Back to using Pramipexole 1 mg (1-2 tabs at bedtime) to see if I can get this under control. I too gained a bunch of weight on this med (about 80 lbs.) since I was diagnosed with WED in 2005. Have tried every drug out there but this is the only one that works. So, I have to figure out how to lose some weight. I just had knee replacement surgery and don't want to go through that again. Knee bad due to osteoarthritis. Of course the extra weight is hard on the knees. So, do I go crazy with jerking legs, no sleep, weight gain, knee pain or ???? To top it off, I have a boss who does NOT understand or care. She sent me Certified Mail (disciplinary letter) while I was in the hospital 2 days after my knee surgery. Can you believe it? Sorry to dump it all on here but I don't know what I would do without all of you who understand.

[debbluebird]

It sounds like you might be starting to go into augmentation with the patch. If you are, you will with the pramipexole too. The more you take the worse it gets. I've had both knees replaced and also gained 50 pounds. The problem with going off the drug is that it will get worse for awhile. One week to 2 months. You will need an opiod to get through it. Then maybe after a little while you will be able to go back on, at a lower dose. As far as weigh loss goes, I had to get strict and do atkins. It was the only thing that worked for me, and I'm still in the middle of that. I've been off the pramipexole for about a month and started to see a difference in my appetite. Good luck.

[ViewsAskew]

Ditto was DEB said. If you had increased symptoms while taking pramipexole, ropinerole, Sinemet, or the patch, it's often a sign you need to stop those meds. if you had worsened symptoms with pramipexole, then switched to the patch to resolve, it could very likely seem even worse.

What's your history with doses and medications since you started taking stuff for RLS/WED?

[badnights]

As Ann suggested, please do give us your history of medication use. When you say you''ve tried every drug out there, do you include opioids? They're pretty much the only thing that works for severe RLS/WED when the DAs fail - except there are some people who do well with anti-convulsants. have you tried any opioids or anti-convulsants?

A lot of us find that we need to combine medications, so as not to get too high of a dose of any single med - eg. an opioid and a DA, or a DA and an anti-convulsant. (But from the sounds of things you should stay clear of DAs - no rotigotine/Neupro, pramipexole/Mirapex, ropinirole/Requip)

What is the doctor like who is treating your RLS/WED? Is she/he knowledgeable about the disease? Has he ever heard of augmentation of RLS? If not, he is not very knowledgeable yet and you will have to help him out by bringing him information.

[Debrasuzan]

I am under the care of a neurologist. She seems to know quite a bit about RLS & she is very good to listen to what I have read about the disease.
I have tried requip, tramadol, gabepetin, sinemet, amatryptoline, clonipin, etc. some I have tried twice but still didn't work. I have not taken opoids.
I took 2 Pramipexole at 9 p.m. And one Tylenol 3 with codeine. I cannot hold still and it is painful.
I gotta get up and move now so gotta go..... Think I will call my neurologist tomorrow.

[ViewsAskew]

Clonazepam (Klonipin) and amitryptaline and not necessarily good for WED, so not surprising they didn't work.

Because it got bad while taking Mirapex, it's highly suspect that you are augmenting. It's even more likely because you are having trouble with Neupro. It very well could be that the symptoms are so bad because of the drug and that when you stop the all dopamine drugs for a few weeks, your symptoms will subside. It's not for sure, but it happens very often.

There are several other drugs similar to gabapentin to try. First is Lyrica. Next is Horizant.

Opioids are also available.

If your doctor is not familiar with augmentation, you may not get the help you need. Let's hope he/she is.

Oh - have you had a serum ferritin test recently?

[badnights]

Whether you doctor knows about augmentation can tell you how much they know about RLS/WED (if they haven't heard of it, or think it should be treated by increasing dosages as often as necessary, they know dangerously little about RLS/WED.

Another test is how much they know about blood ferritin levels. They know a bit about RLS if they know that iron is an issue and raising iron sometimes helps. A bit more if they realized that RLSers should have over 50 ng/ml ferritin in their blood ( ferritin is a protein that transports iron). And they keep up to date with recent developments if they know that blood levels of ferritin should be over 50 and preferably over 100 ng/ml before a patient is prescribed the dopamine drugs (pramipexole, Neupro, etc) , otherwise augmentation (increase in symptom severity) is likely.

Some things in your drug histry suggest someone (all the same neuro?) does not know enough:
- Sinemet cuases augmentation in most people and is not recommended for daily RLS/WED;
- Klonopin as Ann said does not address the symptoms and has been replaced by the Z-drugs as sleeping aids of choice for RLS/WED; and
- amytriptyline is a tricyclic antidepressant, these have been known to worsen RLS/WED symptoms in some cases and never to help them; I hoipe you were prescribed that for depression not RLS.
- I bet your answer to Ann's question is no? (have you been tested lately for ferritin)

One of the most useful description of RLS treatment available today was wrtten by a doctor with over 15 years clinical experience treating RLS/WED. Copy and print the abstract and citation at:
viewtopic.php?f=2&t=1068&p=65657&hilit=buchfuhrer+2012#p65657
Take the printout to your neuro and tell her you heard it's good.

Also, click on the link in my signature. This leads you to a pamphlet on augmentation by the RLS Foundation (soon to be Willis-Ekbom Disease Foundation).print that, and give it to her as well. First highlight anything pertinent to your situation - anything you've experienced - then print and bring that to her as well.

Finally , get your ferritin checked. There are references on this board about that as well.

Your boss sucks and should be given RLS for 3 weeks to teach her how to be human. I had to deal with someone like that. She eventually realized her mistake = that I was NOT a malingerer,, I was honestly disabled by disease. She has never apologized but does act quite differently now. She was a colleague not a boss, but did a fair amount of damage. People like that are an added burden on an already-difficult life.