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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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  • kaz_40
    kaz_40 diagnosisisalie

    Posted

    Hi I was diagnosed last year with fibro by a rheumatologist, I spent 10 years trying to find out what was wrong with me seeing many specialists lost count of bloods taken different tests done I had tests done from head to toe ct scans MRIS heart tests lung tests evrything got tested. all results came back negative. in the end my gp sent to see a rheumatologist. he wanted to rule out rheumatoid arthritus so sent be for a bone scan more bloods taken he did a pressure point test 118 in total on different parts of the body I had the full 18. the only thing that showed up was low in vitamin d. he then diagnosed fibromyalgia. you go through different emotions with fibro anger grieve for the person you use to be.denial and finally exceptance. It took me over a year to accept what I had. I dont take tablets as have had very bad reactions to them Its hard accepting the person you have now become.especially when youve always worked and been very active. Its normally a rhematologist that diagnoses fibro.. fibro affects each every one of us differently in the severity you have it.I hope you get some answears take care
    • diagnosisisalie
      diagnosisisalie kaz_40

      Posted

      Thank you , I hope that with today's research and technology that they find a cure for FM. It is very sad to imagine how it can change a life of a person.
  • loxie
    loxie diagnosisisalie

    Posted

    So sorry to hear of your pain issues hon.  Fibro does really like to attack those who have had surgery trauma - it's very likely that your being laid low by anaemia and then surgery for hysterectomy have brought it on.  It's a hateful unfair spiteful condition which is totally not yet understood by any of the medical profession, although it's treatment is more advanced in the US and other parts of europe than it is in the UK, but still not good.  Pain meds go some way to helping but they arent the full answer.  We dont seem to know the full answer yet.  I find the best help for my symptoms to be de-stressing and relaxation (easier said than done I know it) as it flares up badly when I'm under siege or stressful.  Getting sufficient and quality sleep is essential and if you have apneoa issues, that will be a real aggravating influence on the severity of your symptoms.  There are studies in the USA that point to sleep problems being a contributory 'cause' to fibro and not just a 'symptom' .  Work at relaxation (meditation, mindfulness, yoga, etc) and finding a way of improving sleep quality and quantity and you will definitely see a reduction in symptoms.  the hard part is achieving that relaxed and unstressed state - but the payback is worth the effort.  Answers is what we seek most and answers is what we get least of but we'll keep hunting them down nevertheless. xxxx
    • diagnosisisalie
      diagnosisisalie loxie

      Posted

      As I was reading your post , I remember the first visit to the RA. After he diagnosed me, he told me to "Take 2 days off". I looked at him as if he must of not understood English as I just explained that my responsibilities start at 5 am and don't stop until 11 pm if I am lucky. On the weekends I get up at7am but then I am usually doing more physical things on the weekend. I need to figure out this relaxation thing out, I am one that if I am not stressed to the highest point at all times that I actually get even more stress. I never say no to things, I over do everything that I do. Only if there were more hours in the day .
  • charlotte1824
    charlotte1824 diagnosisisalie

    Posted

    I'm so sorry for you, I'm like you I can't just accept and get on with it. I need to read research and medication reviews and info on other diseases that I was oblivious to before as I need answers. I don't understand how a person can just go from healthy to hell so quickly with massive changes. I was also anaemic for a good while before they saw that, I'm not anymore but I wonder if that's a connection.

    Are you medicated for the hormones due to hysterectomy? I know menopause symptoms due to lack of hormones can cause pain in your bones plus lots of other symptoms.

    What mess are you on? I don't like mess either by sometimes you have to just do what you have to to survive.

    • diagnosisisalie
      diagnosisisalie charlotte1824

      Posted

      No, the OBGYN left one ovary  as he didn't want me to go through menopause so early in life. He was from the other coast and cared about his paitents. The RA has me on Tramadol (I stopped it as I thought it didn't work and told the RA, but now he says I have to take it every 4 hours).I am also on LYRICA , but I can only take it at night , it makes me sleep. Then I am on Cymbalta as well. When I am a sleep , I am fine. Oh ya and then Ambien, I started taking it as I thought maybe it would benefit the other medicines, it put me to sleep so I took it regularly . I tried to go to bed without it one night and had problems sleeping. I didn't think I had sleep issues. I just had a sleep study . I am being a thorn in my doctors side, I have given him a list of test I want done. I have also requested to see a thyroid and an infectous disease doctor. I also have indicated that I want an MRI done too.
    • charlotte1824
      charlotte1824 diagnosisisalie

      Posted

      Wow ur on a lot of meds already, I've tried lyrica, gabapentin, elavil, robaxin, co codomal, tramadol, topamax and none of them have worked or my side effects have been to severe. The new one they want me to try is cymbalta but reviews seem to be mixed.

      Valium used to work a bit and still can take a slight edge off but it's not amazing and Drs are funny about prescribing.

      Perhaps 1 ovary is not enough to produce the levels of hormones you need. I don't know huge amounts about it so I can't say for sure but perhaps they should re check your hormone levels.

      I wish I could help you and I don't think U should give up in searching for answers, I never will, although it is frustrating it gives me a kind of determination which I think u need when ur in chronic pain on a daily basis or it would be all to easy to give up.

      Good luck and keep being in charge with the Drs, if u let them fob you off they will, be your own advocate.

    • klaregee
      klaregee charlotte1824

      Posted

      Hi Charlotte,

      Just wanted to sympathise with the med situation, I've been exactly the same and the side effects are atrocious! I've been trying hydrotherapy massage and it is wonderful, although its so expensive I can only afford it every few months. Valium really helped me but they are highly addictive, I became so worried about my dependency I begged the Dr to withdraw them. I AM NOT ADVOCATING DRUG USE but weed has helped me a lot, unfortunately I am technically a criminal as I live in the UK and my Dr is an advocate for medicinal marijuana. It isn't for everyone and I would never suggest anyone try it but it highlights how misunderstood our condition is when the medication they provide leaves u suffering more than you were before u took them!!

      Hopefully I haven't offended u with my post! Xx

    • bronwyn97278
      bronwyn97278 charlotte1824

      Posted

      Yes Charlotte.....I too feel that anaemia is Either a Symptom, or a prelude to Fibro...as too many have had this issue on Preliminary bloods.        and yes,diagnosisisalie, we have ALL been where you are at now, the NO way....there has to be Something, and Yes, we all are trialing different approaches to se if we can "get better"....but so far none of has.....I, too, went back and studied again, trying to Prove that I still "had it"....but that just really finished me off  (the stress of meeting the "dead-lines" required was just that little too much...and yes, I feel a failure most days, and Just wish that I could be that Other person.....but seems as if I'm not going to be that person again....I am 58, but feel like 88+........and yes there are days, like today, when I have to go away, and wish I could just stay in my home environmentBron, and Rest....so know that I am going to suffer for this, and hoping that I can have just ME time after it all.....it is SO  necessary to stop, and Rest, as even the smallest extra thing, makes us Hurt......try and do what is necessary,...and to me that would be looking after your girls, and making sure they are happy and safe.............Bron
    • charlotte1824
      charlotte1824 klaregee

      Posted

      Hi,

      No offence taken, I think when we're up s**t creek without a paddle we should be able to use whatever we want that benefits us or eases the daily misery, law or no laws. Until the scientists come up with something that helps and doesn't cause a massive array of side effects that enhance our already painful or odd symptoms then we can do what we need to.

      I have tried massage and holistic things too but honestly they have just aggravated everything and I don't want to pay to feel like I've been beaten up!! I miss the days a massage was bliss and not a source of anxiety as to whether I'm going to move well or be able to function the next day.

      I don't believe fibro is this mysterious disease, I still have hope the Drs just haven't done the right tests and figured out the true source. There is a million tests they could do which they don't for cost and other reasons but I'm sure if they did every test known to man they could pinpoint the cause. I have to believe that though or I truly would spiral into a vary bad place. Hope is the only bit of light at a very dark tunnel.

    • charlotte1824
      charlotte1824 bronwyn97278

      Posted

      Hi bron, I was also folate deficient and vit d deficient (another big preluding factor) judging by what others have said, I was also low but not deficient in vit b12, that's all they test for really so god knows what other bits I could have been deficient in. They left me with iron deficiency for ages as the initial test came back ok but apparently there's the other test they can do if ur still fatigued where I think they test plasma levels and I was a few milli point away from needing a transfusion.

      Perhaps it's the supplements they give you as when levels where corrected I never got better. I can empathise with the feeling 88, I was 24 when this kicked off and honestly I sometimes wonder how it's possible to feel so bad when nothing appears to be wrong.

      Does anyone remember that advert on TV where the guy is sleeping and a gorilla comes in and swings him round by his air and basically bashes him up all night. I thinks it's a tea or breakfast advert?? Well I think we all have a gorilla hiding in our house!!

    • diagnosisisalie
      diagnosisisalie charlotte1824

      Posted

      They threatened me weekly about transfusions while I was anemic, I refused. I ended up doing 3 times aweek iron, iv . It was expensive.
    • diagnosisisalie
      diagnosisisalie charlotte1824

      Posted

      Not being one who would normally take medicines, it seems as if I get all the side effects on these meds.
  • bluesman
    bluesman diagnosisisalie

    Posted

    I'd make a few observations here citing my own experience. It was only when I was diagnosed that I had the power to actually seek treatment. Through trial and error I am on a combination of 75mg of Amitriptyline, magnesium/calcium/vitamin D supplement (3 x RDA) and Htp5 on a high dose. After a hellish bout of about 12 weeks of back and leg pain, I have been pretty much pain free for about two months. I'm treating it as respite and rejoicing one day at a time because I know it won't be gone forever.

    I'd say that if you have had everything traceable eliminated and the Rheumo reckons it's fibro, then it probably is. Sleep apnea doesn't produce these other symptoms and some doctors are right sods about even acknowledging fibro let alone diagnosing it.

     

    • diagnosisisalie
      diagnosisisalie bluesman

      Posted

      Thank You for your feedback. I am adding things to the list. I refuse to give up, if I have FIBRO or not I am going to live my life until I am six feet under .
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