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I doNOT Accept this Diagnosis

Posted , 8 users are following.

diagnosisisalie
diagnosisisalie

I have always had the additude that "I am alive" I must be doing something.When I pass I will rest. I am a mother of 3 teenagers, a full time college student who carries a 4.0 and I run an exoctic nonprofit bird rescue in my home.I have also been married for 20 years. I have always had faith in God and that when you start nosing around with doctors you will find things that are wrong. I didn't believe in medications. Now I am diagnosised with fibromyalgia. I take enough pills through the day that I am lucky to have enough room in my stomach for one meal a day. I move around like I am 90 , I am 40. I also have been going to school for a longtime, and I had anemia for an entire year, then a hysterectomy . Then 6 months of good health and BOOM ,PAIN everywhere ( it feels like it is in my bones). The rhemitoid dr. says it's fibro, primary dr. says its sleep apnea . Meanwhile , what test have been done is because I research and fight with them. I am not satisfied with giving in, I need answers . I know that this "journey" is different for everyone . I am so sorry for your pain. I must do something about this.

2 likes, 32 replies

32 Replies

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  • klaregee
    klaregee diagnosisisalie

    Posted

    I hear you, I'm a 33 yr old single mum to a teenager daughter who was working full time and running a small property business from home. This was all done after I was diagnosed with fibro 8 years ago.

    After a silly fall I have became more or less housebound unless someone is with me, I am totally reliant on my partner and my business has died a death! I'm now also on stat sick pay so our income has dropped £700 a week!!

    I am finding it extremely difficult to accept I am now unable to do the things I used to, and to top it off I have now been diagnosed with rheumatoid arthritis making recover very unlikely. Some days it feels like life is over and I am always researching the best vitamins and diet to follow but I've learned that I need to listen to my body and if I'm unable to do something I REFUSE to feel guilty/! Its an illness like any other, if we had visible symptoms to show the pain and fatigue etc. then we would receive so much more understanding.

    I'm so glad you have faith, this must be a very trying time for you. I also believe a fibro diagnosis is the go to when they hear fatigue and pain, and like u I've begged for blood tests etc. In the silly hope I will have a condition with tangible effects that ppl will take seriously!! My next course of action is to demand a thyroid check as hyperthyroidism seems to present similar symptoms.

    Good luck in ur journey, I hope you find some peace and acceptance of your condition xx

    • diagnosisisalie
      diagnosisisalie klaregee

      Posted

      Good about the thyroid test, I am friends with my pharmist and she had the same problems word for word. Her husband had to blow dry her hair, she couldn't hold the hair dryer up. She had her thyroid test , and it came back as "normal" but the low number of normal so she requested to be put on thyroid medicine, it took 3 months of the thyroid meds and her old life came back. Obviously we are all different, different symptoms, severity, and etc. I AM NOT SAYING THIS WILL FIX ANYTHING, I am saying it is on my list of things to do.
    • klaregee
      klaregee diagnosisisalie

      Posted

      I'm coming to terms with the fact I'm going to suffer this long term but feel like I've been brushed off with pill after pill since my diagnosis! The medication is worse than the illness sometimessad

      I live in the UK and there has been a drive to get more awareness and understanding of mental health and chronic pain conditions so fingers xd it brings the 'invisible suffering' into focus.

      In the meantime I'm working on accepting my bad days and making the most of the good, sometimes its just very hard to accept ur limitations.

      This forum has been a great help to me in the past week or so, I've been feeling very isolated and its nice to know ur never alonesmile Sending hugs xx

    • Meg53
      Meg53 diagnosisisalie

      Posted

      I love your attitude, keep on exploring every avenue. My doctor I think is sick of me asking for tests as they mostly come back normal, so I think I will take a break. I am lucky I have a pain specialist so we are trialling different medications.

      Obviously each of us have different bio chemistry, so what works for one may not work for another, despite this, I would be interested to hear if you come up with any answers, please keep us posted.

       

    • diagnosisisalie
      diagnosisisalie Meg53

      Posted

      Yes, we all have different biochemistry. Sometimes I think they think that they went to doctor school and therefore shouldn't be questioned,although I see it as we are the ones who know our body the best. I am working on putting a list of test together and some other things. When I have the list I will share with everyone.
  • brenda42506
    brenda42506 diagnosisisalie

    Posted

    Did they test you for Rocky Mountain spotted fever/ Lyme disease before fibro? If not demand they test you. My fibro pains from rmsf. Do you get ibs symptoms off & on a lot? And also clear stick phlegm?
    • diagnosisisalie
      diagnosisisalie brenda42506

      Posted

      Hi,

      They just ran a Lyme disease test this last Friday. It's sort of sad that I am telling them what test and what specialist I need. I don't see it as an on and off type of thing. It's like I was in a major car accident and that jerk is constant through the body. I think it is bone pain though , but the RM says it is muscle ( FIBRO) . Clear stick of Phlem? My sinuses are acting up , thought it was the season.

    • brenda42506
      brenda42506 diagnosisisalie

      Posted

      Yes I get clear stick phelem. I have respiratory problems. And the bed bone/ joint pain. Base skull discomfort. Neck is always snap crakel pop. Back pain. My back always feels like needs popped. Ribs hurt & sides of breast. Kinda feels like lymph node pain ibs symptoms tenderness all over sad so many symptoms. It's all from rocky moutain spotted fever. I've had 3 positive test. What they say about your lyme test?
    • brenda42506
      brenda42506

      Posted

      Sorry I meant bad bone/ joint pain.
    • diagnosisisalie
      diagnosisisalie brenda42506

      Posted

      I haven't gotten the results as of yet. The test was done last Friday. Is there a cure for your rocky mountain spotted fever?
    • brenda42506
      brenda42506 diagnosisisalie

      Posted

      I believe if caught early. But took 10 months for me to get diagnosed cause of dumb doctors. They would send me home saying nothin wrong just anxiety & depression. I hurt everyday. My doctor says I describe fibro pain & wants me to see infectious disease doctor.

    • diagnosisisalie
      diagnosisisalie brenda42506

      Posted

      See the infectious disease dr. there was a link between blackmold and the symptoms , an infectious disease dr. would give you some insigt hopefully . Im  not saying it is the answer but it is one more resource.
  • diagnosisisalie
    diagnosisisalie

    Posted

    Saturday is the day the hubby and I hit the GoodWIlls in the area. We make a day of it. He was pushing me to go, as he was prepared that if I sat at home I would get cabin fever, as this was the past . As we went to the first one, I was happy and not in too much pain. I got back in the car to go to the next one, this  time I got tired, and began hurting a lot. I have always done the false smile when I was sick or hurt. I am mom and wife, I am the strong one in the house. SO after we left the second one, I had the thought that "Oh boy , I get to go home." I was taken to two other ones, I was so tired, but this was the normal thing that my husband and I would do. When we got home, I took a nap (this isn't  like me) . I was hurting most of the night.
    • kaz_40
      kaz_40 diagnosisisalie

      Posted

      Unfortunatly this is what fibro is like, anything we try do it just knocks us back. My husband took me for a ride out on sat. I felt so unwell and in alot of pain had to come home. its a horrid condition to have it affects our entire body. we arnt able to do what we use to do, we have all found that out we have to try to pace ourselves as if we dont fibro can knock you around so much that you can end up in bed for days.
    • diagnosisisalie
      diagnosisisalie kaz_40

      Posted

      Since I am still trying to do the specialist and different testing , I am not saying that I am accepting this diagnosis . I have an appointment with the sleep doctor tomorrow ,to find out that I have sleep apnea . That is suppose to play a major role in this. I can say that I am pushing it and still sitting with the "mothers smile" letting my kids know all is fine, but in pain. My husband thinks that the sleep epnea will change everything. I am so worried because I am suppose to be in my last semester of schooling in special education interning for 6-7 hours on my feet 5 days a week. I can't see it being done, this really scares me.
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