RLS sufferers, I have some questions:

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educ8athome
Regular Member


Date Joined Aug 2011
Total Posts : 79
   Posted 9/27/2011 2:26 PM (GMT -6)   
I go to the doctor tomorrow on my knee.  This is a follow-up and could even end up being my final appointment with this doctor.  This appointment was to have happened on 8-31, but my emergency surgery pushed it out this far.  To bring you up to speed:
 
I injured my knee at work on 3-18-11.  When I got hurt, I also did something to my calf and reported it at that time.  On 3-25-11 finally broke down and reported it.  I saw my doctor finally around the 9th of April.  MRI did not show anything wrong with my knee.  Since it was giving me the most trouble, this was his primary focus for the time being.  I was put into PT for 12 visits.  In early May, while on the exercise bike bawling my eyes out, I called the office and told his assistant that I wanted him to schedule the exploratory surgery we had discussed 2 weeks previous.  He was more than happy to accomodate me and I had the surgery on May 26th.  2 Meniscle tears were discovered along with tissue under my knee cap.  My knee was found to be in perfect condition with no arthritis present.  Today I am still having issues with the knee and have come to the realization that I will probably never kneel on it again, which is difficult for a photographer.  In addition, my calf that I was having issues with grew in intensity and frequency in terms of the muscle spasms, cramps and over all pain.  And now, for about 8 weeks, it gives me pure hell when I go to bed at night.  My normal pain meds aren't touching it.  My muscle relaxer offers no relief.
 
There's no history of RLS in my family that I know.  And, I have been researching and can not find that there is any evidence that injury causes RLS.  However, everything else I am reading indicates that I might be looking at RLS.
 
What are some questions to ask my doctor when I see him tomorrow?  This issue has GOT to be covered, and I want to be certain I am asking all of the right questions to get to the bottom of it.
 
Thanks,
 
~Cathy

White Beard
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Date Joined Feb 2009
Total Posts : 3702
   Posted 9/27/2011 4:42 PM (GMT -6)   
Cathy
 
I am sorry for all the trouble that you have been having with your knee. I can really empathize with you, previously I have had problems with both of my knees and had to have arthroscopic surgery done on both of them. They have never been right since, one of them I had a torn meniscus and it was also folded over and it caused the knee to be locked in place and I could not bend it at all. The healing time was long and painful and as I said they have never be completely right and pain free since that time. So I do understand what you are going through.
 
Restless Leg Syndrome, is a very painful and difficult condition, I know my ex had it, and it ran in her family, her father also had it, as well as her two brothers and another sister! I know my ex first started having problems with her leg shortly after we were married, and she was about 20 or 21, and we had been married for over 25 years before she was finally diagnosed and received treatment  for it. It wasn't till around ten or so years ago,  that it was finally recognize as a real medical condition and medications were finally developed to treat it. The use low dose Parkinsons medications, and for allot of people this is very effective and works really well for them! It was a real Godsend for my ex, and at that time for me too! As there was many many nights that she would be up pacing the floor, because of the pain and ( as she would say the undescribable feelings she would have in her lower legs!)  Riding in a car late at night was especially difficult for her!  Anyway after she was finally given a diagnoses and given treatment she was finally getting some relief from it and getting some real sleep!
 
I do hope that you can get a diagnoses and if it is RLS I hope they can get you started on  treatment.  I do wish you all the Best, good luck on this!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

educ8athome
Regular Member


Date Joined Aug 2011
Total Posts : 79
   Posted 9/27/2011 5:57 PM (GMT -6)   
Thanks, White Beard. Like I said, I have been doing some reading and all indicators point to RLS. Fortunately, not as severe as what your ex had, but enough to cause me sleep disturbances. And, what really, REALLY sucks is the fact that it starts nearly the second I hit the bed.

I take my PM meds about :30 before bed. When I get in bed I position my 2 head/upper body pillows, then I position my pillow for my knees (I have to keep my hips aligned or I wake up with back issues). The second that pillow is comfortably in place I will have tingling sensations, burning and tremors. I'll have to start rocking my leg back and forth, which disturbs my husband. We're about to have to get separate beds! Then, I'll toss and I'll turn and EVENTUALLY I'll take another muscle relaxer which fights it off enough to let a 2nd percocet take hold...then I can sleep...about 4 hours later. It is really interrupting my nights in a horrible way.

I'll know more tomorrow. Praying for some kind of relief.
I am unable to come up with a clever signature. I don't even really have a true diagnosis. I am on percocet and robaxin for chronic hand pain. So, in lieu of a dx and all, I'll just say that I am the daughter of an awesome and mighty KING, THE King of Kings and it is only through Him that I am allowed to live each day.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 9/28/2011 12:06 AM (GMT -6)   
Cathy
What you have described is exactly what it was like for my ex, she had such a hard time with it and it is disturbing, it was hard for both of us, but she is the one that really suffered, I really did feel bad for her! After she was put on Requip things got much better for her. It really worked good for her. I sense an urgency in your post, I do hope that your doctor can help you!
 
    Just as a suggestion, have you thought about getting twin beds and having them side by side? I have severe back problems and I can not lay flat, so for many years I slept in a recliner, then we got adjustable extra long twin beds that each adjust seperately. We put them side by side in a kings size sleigh bed frame, ( they fit perfectly in it) and then I could have my side adjusted up so I could sleep in a fowlers position, and she could sleep in the position she was most comfortable with. We were together but we could move and sleep the way we wanted without disturbing each other. With my back and sleep apnea it really worked out fantasic! As I would often just take my wireless remote and slightly change the position of my bed, sometimes many times a night without bothering her. And during the day when no one was sleeping and the comforter was on the bed it looks like any other normal king size bed. just something that might be worth looking into???
 
Good Luck and I do hope your appointment goes well for you!
 
White Beard

Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

educ8athome
Regular Member


Date Joined Aug 2011
Total Posts : 79
   Posted 9/28/2011 8:50 AM (GMT -6)   
I am desperate for relief. Last night was no different at all except I went ahead and took 2 pain pills from the start, so sleep came faster. That may be one answer.

I haven't thought about the adjustable beds, but may look into it this weekend with my husband. I am ready for a bedroom suite change anyway, this may be the time. Thanks for the advice.

My appt is at 3:30 CT in Knoxville. It's an hour + there and an hour + back...in a pickup truck. SO, who knows what kind of shape I will be in when I return home. I'll update as soon as I can.

Thanks again,

~Cathy
I am unable to come up with a clever signature. I don't even really have a true diagnosis. I am on percocet and robaxin for chronic hand pain. So, in lieu of a dx and all, I'll just say that I am the daughter of an awesome and mighty KING, THE King of Kings and it is only through Him that I am allowed to live each day.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/28/2011 9:29 AM (GMT -6)   
 
       Cathy, I agree with WB, and we also have a split King adjustable bed. We love it! Both my wife and I suffer back problems, and each of us adjust our beds at different angles. I'm kinda like WB, and change my settings several times, as it seems to give me a little more relief when doing so.
 
      One thing I wanted to point out, is that you may be able to write it off as a medical expence, if you can get your Dr to write some type of script for it of sorts. We did this with our Tempur-Pedic, and the Tax lady said it was good enough, and we got the write off on it. This will reduce the overall cost of the bed, which can be expensive, especially if it is the adjustable type with remotes.
 
      Tempur-Pedic is very expensive, especially in a split King, but there are other beds that will work just as well and there is no need to spend more than you need to.
 
     Take care,
 
     SE wink
Moderator Chronic Pain Forum

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