Got a question about disabilities? I have answers

by Lady Lee 99 Replies latest jw friends

  • AGuest
    Knowing Scully I know she wasn't trying to warn me of something.

    Oh, no, dear Lady Lee (again, peace to you!)... I didn't take it that way, at all. I took it that Scully was "protecting" you, saying you didn't need to explain yourself, and I totally get that. I only meant, to dear Scully, that IN explaining yourself, you were educating others... and that that is a GOOD thing.

    My apologies if it seemed like I meant something else - I did not.

    Peace to both you and dear Scully, truly!

    A slave of Christ,


  • Quentin

    Thanks Lady Lee for starting this topic...I am just beginning my journy down the disabilty road. Have rheumatoid arthritis, damaged nerve on the left side and a de-fib heart condition. Mobility has become the hardest thing for me, for now I use a cane. Like StAnn I pay several days for one day of activity, and my feet give me hell as well. In May had emergency surgery, they enter from the back and drained 2 liters of fluid off my left lung. Don't remeber what the procedure was called, but still have some pain from it. I'm out of painkillers till Tuesday. The next three days are going to be hell, Heh, heh, to top it off am trying to stop smoking. Best to all of you, very interesting thoughts and comments....

  • Lady Lee
    Lady Lee

    no problem AGuest

    Quentin Glad you joined in. Sounds like you are dealing with a lot. If you find you can't wait until Tuesday find a clinic before them or get to a hospital.

    Pain has a way of getting worse. When we are in pain we tend to tense up. That tightens all the muscles, makes breathing harder and increases the pain. The more in pain we are the more tense we get which increases the pain.

    A couple of things I find helpful is to BREATHE and focus on trying to relax the muscles. It is importnat to try to break the pain cycle before it gets too bad.

  • wasblind

    Does anyone use those beaded heating pads that you can put in the microwave

    mine does not seem to stay heated as long as it's supposed too i use mines for

    my lower back and my shoulders and sometimes my knees

  • cult classic
    cult classic

    I'm always looking for a good heating pad. So far the old fashioned rubber water bottles are the best. I didn't know about the beaded ones.

  • wasblind

    the beaded ones are safer to lie in bed with, than the water bottles

    my only problem is it don't stay hot long, maybe i need to switch brands

    my shoulders started aching after i helped my daughter move into her

    dorm room

  • StAnn

    Did your disabilities come on all at once? Or was it one at a time? Have they increased in severity? Is there a chance they will regress (is that the right word?) May I ask what caused your disabilities?

    CultClassic asked:

    StAnn - With fibromyalgia does your whole body hurt? Or is it a fatigue issue? What are the chances you'll recover? Is there any way to prevent getting it?


    Bad formatting, sorry.

    No, my disabilities came upon me gradually. In retrospect, I had symptoms of Fibromyalgia (FMS) and Type 1 Diabetes that I can remember from age 7 or 8. I was in a car accident at age 9 and then 4-5 months later I was raped. This began the PTSD and exasperated the FMS. At age 11 I was diagnosed with Rheumatoid Arthritis (RA). By age 15, I was suffering from full blown Agoraphobia. At age 16, I caught Mononucleosis from a schoolmate and this severely aggravated my FMS. At age 17 I was misdiagnosed with Lupus and went on lots of unnecessary medicine that caused numerous and permanent side effects. At age 19, I gave birth to my first child. At age 22 I had a miscarriage. My ex-husband (the Elder) was a real jerk, refused to care for me or our toddler, even though the doctor put me on total bed rest. I was unable to stay in bed and ended up with a bad infection which has caused lots of scar tissue, endometriosis, etc. At age 23, my ex-husband (the Elder) threw me across the living room and slammed my neck into the front door knob. This damaged vertebra in my neck, which has been a constant source of pain. At age 25, I was finally correctly diagnosed with FMS and had the Lupus diagnosis removed. At age 30, after two surgeries to remove endometriosis, I had a partial hysterectomy.

    Exercise is supposed to help FMS so I started a walking regimen years ago. I was up to seven miles a day. As a result, I have several bone spurs on the bottoms of both feet and every time I take a step, I literally step on those spurs. If you touch the bottoms of my feet, you can feel them. They HURT. I would have surgery for them but I have two severely handicapped children and don't have anyone to care for them if I'm down and unable to walk. Also, all that walking exasperated my RA and I'm almost at the point of needing my left knee replaced.

    When I was a teenager, I started throwing up nonstop and having diarrhea for 2-3 days a week. Doctors didn't know why and my mother was afraid I was anorexic. I've been throwing up 2-3 times a week and having diarrhea for 30+ years. A year ago, I discovered that I'm allergic to soy. If I don't eat soy, amazingly, I don't throw up or have diarrhea. All of the specialists said I had irritable bowel or spastic colon or spastic stomach, all as a result of the FMS. I've been treated for ulcers I never had. I was NEVER tested for food allergies. My husband thinks it's amazing that because I've been practically housebound for years because of the constant vomiting. Once he stated he thought it was a stress reaction, as I always threw up after eating dinner at his mother's house. (I don't particularly care for her.) After almost 35 years of vomiting and diarrhea every other day, it's nice to not have to plan my trips out of the house around the proximity of all of the public restrooms in my path!

    Unfortunately, the chronic vomiting has damaged my esophagus and my bones. The bone damage makes the RA and the knee problems worse.

    Now, the endometriosis and fibroid tumors are the worst problem I have right now. It can be virtually impossible to stand up because of the endometriosis sometimes. And after being jolted around on the roller coasters Tuesday, let's just say that I have a lot fewer fibroid tumors left in my uterus at present. My husband was amazed by that, by the way. I desperately need a hysterectomy but can't have one until I find someone to care for the children while I'm recovering. My husband can't care for me and the children and my handicapped cousin. My doctor even contacted adult protective services to see if they could get some assistance for me because she wants me to have a hysterectomy so badly! They just referred me to the other agencies who had already told me that they weren't equipped to care for severely handicapped children. So the search continues. I'm interviewing someone on Monday, as a matter of fact, to see if he will be an acceptable caregiver.

    (If you read my bedbug thread, you'll know why I had to fire the last caregiver!)

    And I haven't even touched on the diabetes, which went undiagnosed until I was 40. Nobody knew what was wrong with me and why I was so sick. My pancreas doesn't work and may never have worked. After meds for Type 2 Diabetes didn't work, they did further study, found out I was Type 1 (apparently they can tell by a blood test), and put me on an insulin pump.

    I'm not even going to discuss my mental health issues, because they are mostly reactionary. But the agoraphobia runs in the family.

    Now, CC, that answers your first group of questions. Regarding your second group of questions, FMS causes whole body pain and severe fatigue. Lack of proper sleep also causes whole body pain and severe fatigue. I had a sleep study done two years ago. I slept pretty well, for me, for six whole hours. In that period of time, I only woke up 155 times. I barely went into deep sleep ever. The doctor says that chronic pain constantly wakes you and that you can't really do anything about it, so my sleep issues are untreatable. Thus the FMS stays bad.

    On the plus side, with RA, I always know when it's going to storm!

    I do take Lyrica but it doesn't help that much. At least, not for me. I tried Neurontin briefly but it made me suicidal so I quit after 10 days.

    So, CC, the chances I'll recover are zero. However, I don't ever remember a time in my life when I wasn't in pain and my mother says that I was always different, from birth. In some ways, that's a blessing because my m-i-l is now suffering from RA and is devastated because she has lost so much mobility. I've always felt really bad physically so every day for me is just a matter of degrees of feeling bad, some better than others. I'm never pain free. So this is my "normal" and in many ways it's not as devastating for me because I don't have anything to compare it to.

    Now I've added migraine headaches. Never had those before.

    Believe it or not CC, as I sit here typing all this, I'm actually amazed! I do pretty well for someone with all of these issues! I'm proud of myself!!!



  • StAnn

    BTW, you know what really aggravates me? All that "No Pain, No Gain" crap. I was in horrible pain with my feet and knees but kept making myself walk for exercise, chalking up the pain to FMS. Then I find out it's bone spurs and RA. Unfortunately, when you have FMS, doctors tend to throw all of your problems under the FMS diagnosis and not really care for you properly.

    IMO, anyway.

  • Lady Lee
    Lady Lee

    Good lord StAnn What a mess the doctors had made of things.

    I was on Lyrica for about 6 years. last year we switched to cymbalta (duloxetine) It is working pretty well with a lot few siude effects than the lyrica. If you haven't tried it yet ask your doctor

  • StAnn

    Lady Lee, I've seen the commercials for Cymbalta but thought it was just for depression. Since the Lyrica is an anti-seizure med, would I take them both?

    BTW, I forgot to mention my ADHD. You see, Lady Lee, I could be a doctor's entire practice all by my lonesome!

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