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Severe Pain at Night and Upon Awakening Some Pain Tingling During the Day...want to meet others

peony Community Member December 02, 2011
  • Hello.  I am here because I can't get back to sleep; too much pain. Last March, 2011, a number of things occurred: I was weaning off Cymbalta, I fell (a good fall onto my hands and legs); I got a tetanus shot following the fall.  Within a week, my hands and fingers swelled up, then my ankles and feet started swelling. ER and internist treated it like an allergy.  Then, I started having pain in my hands.  I re-weaned off Cymbalta (even more slowly).  Went to one rheumatologist who said I did not have RA.  Went to a second one who said I did and gave me five weeks' of Methotrexate shots which landed me in the hospital with a terrible cough and pain in my right side.  Was given Prednisone (I think antibiotics) and Morphine for the pain-I am very sensitive to pain meds; they make me itch or nauseous.  Got out of the hospital, weaning off the Prednisone (which had skyrocketed myblood sugar and blood pressure which I had to get under control at home).  As soon as I felt okay, I went to the Hippocrates Health Institute in West Palm beach, FL, where they put you on a raw vegan diet and real mind body, spiritual program. I did feel better, however I was still weaning off the Prednisone.  Staying on the diet was a challenge (esp since my prior diet had been very bad - I had gained about 60 pounds over the last 10 years via depression and wishing I had not moved to FL, missing my family and family problems, isolating...).  After the Prednisione wore off and I was somewhat on the diet, I went to the Mayo Clinic in Jacksonville, where the rheumatologits there definitively concluded that I did not have rheumatoid arthritis, or any other auto immune type disease. They did not give me a formal diagnosis of figromyalgia, but that is what  they thought it might be.  They tested me for everything.   It has been over a month since I was there and I am in terrible pain in the middle of the night.  The wrist swelling is worse at night. The ankle and feet swelling is not too bad - I wear sneakers every day.  I have pain during the day that seems to migrate around.  Sometimes it is not too bad, and /or I have tingling sensations.  I went through a month where I felt burning sensations, too.  I am on an antidepressant Liibyrd (? relataively new) through my psychiatrist. I was crying a lot.  I need to establish a relationshiop with a rheumatologist here--the Mayo can't treat me from here and I can't keep going back there.  I don't/wont go to the rheumatologist who gave me the Methotrexate, and the first rheumatologist I went to had no communication skills and was pretty abrupt (to be diplomatic).  I am now very, very scared and very depressed.  My money situtation is very scary. I would like help, support....don't have that many friends here and I think they are getting bored wiht me, as I  think is my family.  I have started exercising, stationary bicycle, which I think helps.  I also am trying to avoid gluten and sugar (last nigth i had ice cream and the pain was very bad at night).  I my try to switch to a more holistic doctor here (he uses both western medicine and holistic methods).  I feel like a chicken with my head cut off, running around looking for help....feel very needy and scared.  I am even crying as I type this...thanks for reading/replying...

1 Comments
  • Karen Lee Richards
    Health Guide
    Dec. 02, 2011

    Hi Peony,

    Welcome to ChronicPainConnection!  It sounds like you've been through a lot in just a few months time.  I know how scary it can be when you feel so bad, are hurting and can't seem to get a firm diagnosis. 

     

    The symptoms you describe do sound a lot like fibromyalgia. The good news is that fibromyalgia is not terminal can be managed. ...

    RHMLucky777

    Read More

    Hi Peony,

    Welcome to ChronicPainConnection!  It sounds like you've been through a lot in just a few months time.  I know how scary it can be when you feel so bad, are hurting and can't seem to get a firm diagnosis. 

     

    The symptoms you describe do sound a lot like fibromyalgia. The good news is that fibromyalgia is not terminal can be managed.  It may take awhile to find the combination of treatments that works best for you, but you should eventually get to the point where you feel much better than you do right now. 

     

    Most people with fibromyalgia find that it takes a combination of medication, exercise, one or more complementary treatments (like acupuncture, myofascial release therapy, yoga), and lifestyle changes to really get fibromyalgia under good control. 

     

    The best thing you can do to start with is to learn all you can about fibromyalgia.  This link will take you to several articles on different aspects of fibromyalgia:  Fibromyalgia  Just read a few articles at a time as you feel up to it.  If you have any questions, please feel free to come back here and ask. 

     

    I think you'll find that the more you know about your illness, the more in control you'll feel.  Once you know what you're dealing with, know what triggers your flares, and can start working on different treatment options, it's not nearly so scary.  I've had fibromyalgia for over 22 years, so I've lived through pretty much every facet of the illness you can imagine. 

     

    You mentioned that you take an antidepressant, but I couldn't find any antidepressants with a name similar to that.  There's Librium or Librax that are anti-anxiety medications and Lyrica, which is technically an anti-convulsant but  is good for pain and is approved for treating fibromyalgia.  Could it possibily be one of those? 

     

    I hope you can find a good doctor to help you and you start feeling better soon.  – Karen