Pain -- Don't always blame the DD!

Discussion in 'Fibromyalgia Main Forum' started by justjanelle, May 6, 2010.

  1. justjanelle

    justjanelle New Member

    (I officially have FM, but have the post-exertional malaise too.)

    I'd been having a major increase in pain and fatigue the last couple of months. One leg was especially bad. I blamed the FM, and just tried to keep going; 2 weeks ago I stumbled and twisted my knee, which then dislocated every time I put weight on it (I have Ehlers-Danlos Syndrome too, so my joints have always been loose -- but not THAT bad!)

    ER doctor doesn't even touch the knee, let alone examine it, tells me the xray shows only arthritis, and I've just sprained it. Orthopedic guy wants a referral, and doesn't think I need to come in for a sprain. So I have to go to the family doc. to jump through the hoops for a referral. Fortunately, he agrees that something bad is going on with my knee. He puts me on crutches.

    I finally get to see the orthopedic doctor, who finally runs the right test (a weight-bearing xray) and says, yep, the knee is dislocating with every step. Turns out the "arthritis" was a total wearing away of all the cartilege in the knee, probably from past dislocations and sprains, and with the lax ligaments and tendons from the Ehlers-Danlos the bones were just sliding all over the place. They had actually begun to shed bone chips on the corners where they were grinding together when I walked.

    The solution? A total knee replacement. (Coming up the end of the month)

    Oddly enough, my "FM pain" is greatly reduced now that I'm on crutches and not using the knee.

    I don't want to post this as a "poor, poor me" story -- but just to point out once again that we patients need to stop and evaluate an increase in our symptoms, and see if something other than the DD may be causing it.

    Best wishes,

  2. Sheila1366

    Sheila1366 New Member

    I hate to hear that you are gonna need surgery. You are right about checking out pain. I know I often think every pain is FM.
  3. gapsych

    gapsych New Member

    So sorry you are going through this. Never feel badly about venting, that is what we are here for and later you will probably pay it forward by giving advice. Hey, you have with this thread!!

    You bring up a VERY good point that is important for us. Never blame everything on our DD. I have done this twice. It is very hard not to do this.

    The first time I had low sodium due to a medication which now states that it can lower this. I was switched to another medication and my sodium/chloride level are normal. The symptoms are very similar. I even ended up in the hospital.

    For the last six months my sleepiness, tiredness and PEM became much worse and continued to get to the point that I was sleeping 18 hours on some days and the pain was getting worse. This of course can happen with our DD. I had a sleep study and it turns out I have Obstructive Sleep Apnea. I stopped breathing 51 times per hour during REM sleep. No wonder I was tired.

    I have to say my PCP is wonderful. She has over 500 patients with FM and I now have her manage my FM. As you know, sleep is crucial with our DDs. She is the one who ordered the sleep study and I really had no idea I had this.

    I am now on a CPAP and it is not that bothersome as they have improved immensely. So if people snore and you have a bedpartner or anyone else who hears you stop breathing while snoring or snort, it is best to have it checked out. I did not realize that it is a myth that you have to be overweight. Though losing weight can help and is a risk factor, many people have like me a small mouth (lol!!) and air passage. As we get older these muscles lose elasticity which can turn into the OSA. Hopefully this will give me more energy to get back to my former weight. But it is not a cure for FM nor necessarily the OSA.

    Okay, I have rambled on too much but thanks for this post. Confusing the symptoms of FM/CFS/ME with other conditions is the nature of this beast.

    Take care and here is a bump.


    ETA I have been on the CPAP machine for about a week and have worked up to wearing it all night without a problem. Next week the machine will be programed to be at the optimal pressure where I stopped having apneas. I think I am seeing a very subtle difference but it is really too soon to say. The night I had the original sleep study, I felt I had a good nights sleep!![This Message was Edited on 05/07/2010]
  4. HeavenlyRN

    HeavenlyRN New Member

    I think we so often think, "Oh, what now? Must be my _______ (fill in the blank) acting up." But I think we need to be aware of any new pain that comes our way. My friends on the Chit Chat board have all heard this story but I'll mention it here. I ended up on short term disability back in December for back and leg pain. From December 3rd to February 19th I was in the ER 4 times for "pain control." Finally, at the last visit, someone decided that a CT scan of my abdomen would be a good idea. Turns out that I had a complex cyst on my left kidney. I had surgery to have it removed at the beginning of April. While I still have some residual (most likely FM) pain, the horrible, incapacitating back pain is gone. The docs aren't sure if the cyst is what was causing the pain, but it very likely was the cause.

    Also, the wonderful NP at my rheumy's office feels that that cyst and the other benign (non-complex) cysts I still have have been causing me to store lactic acid and that may be the cause of the increased back pain I was experiencing during the winter. I see her again on Monday and we wiill begin to discuss ways I can help my body get rid of the excess lactic acid. She didn't want me "playing around" with meds or supplements until after the surgery.

    So.......that is my long, drawn-out way of saying, "Don't ignore any weird, new pains you might be having." We're our best adovcates for our health.

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