RePost: Don’t Believe that Fibromyalgia is real? This article is for you …

Why is it that we still have people believing that Fibromyalgia is not real? It’s quite frankly ignorance and a lack of research on their behalf. The more stories I hear, the more I realize that majority of us have gone through so much trauma just to obtain a diagnosis and then on top of […]

Don’t Believe that Fibromyalgia is real? This article is for you …

7 thoughts on “RePost: Don’t Believe that Fibromyalgia is real? This article is for you …

  1. My personal experience with fibromyalgia is after my diagnosis I’ve been treated so much like a hypochrondiac that I’ve really been misdiagnosed. I had 2 polpys blocking my airway and could only breath shallow breaths. The polpys were even stated on a CT scan that they were blocking my airway. Undoubtedly the doctor at the hospital didnt notice that- they thought i was having a heart attack. Well upon leaving the floor Doctor said that she thought that I had a psychosomatic desire for oxygen. I’m going to try to get the fibromyalgia taken off my records.

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    1. I absolutely feel you! So many things have gone wrong that I felt bad for going to the doctor. I too felt like a hypochondriac. Imagine us feeling guilty about a REAL disease! I’m so sorry you went through this. I’ve also gotten the psychosomatic crap from my neurologist. I kicked him to the curb. I’m now going to a pain clinic instead where they do understand and are doing procedures, which have been put on hold bcoz of corona for me. They also give me pain medication that proves they believe my pain levels. It’s such a relief. Instead of begging doctors to give you better pain meds and feeling like you’re a junkie.
      So for now the pain clinic Prof has said, especially because its winter she doubled my oxycodone and lyrica and gives me steroid shots…to keep me comfortable during this time.
      I’ve battled for 6 years to get to this point.
      I’m sorry you need to feel like you need to remove a real, albeit invisible disease from your list of conditions. It’s not fair. It really isn’t. Perhaps you should look at a better team?

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      1. Thanks. Yes I have felt guilty for not being able to do things my family expected of me. I wanted to do but but my body wouldn’t let me. I did get a photo of my voice box with the polpys when i had surgery. The airway was almost totally closed. Im going to tell my gp about what the hospital doctor said and get him to try to reword my records. I couldn’t breathe for almost a week and was called psychosomatic for wanting oxygen.

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      2. I feel for you. I sincerely do because I have the same struggles. I’ve had to create a new normal in my life and it didnt happen overnight. I know the guilt. I’ve gotten better at it but it still sneaks in. Please know that you are not alone. I’m always here if you need to vent. You might want to read my post about spoonies. You might be able to relate. The spoon Theory so accurately describes how we navigate our day. We have limited battery power (spoons) once we’ve use them up we are pushing ourselves beyond our limits.
        I’ve battled for years to get people to understand my Lupus and fibro … because it’s invisible and you don’t look sick.
        I’ve learned what some of my triggers are as well. Like anxiety and stress. Boy am I in for a bad time when that happens. I’m rambling but just trying to give you some insight into my life. I was in hospital for 9 days with a swollen abdomen and pain in my side. At the end of the day they couldn’t find anything wrong… it made me feel like I was wasting their time but how do you ignore the fact that I look like I’m going to give birth to a rhino???
        You can find it in my archives in Sept last year…. left the hospital with no diagnosis. Its probably your Lupus or something…. yep just put it down to that. It’s like they look no further because you have these conditions. I also hate the stigma attached to Fibromyalgia. Your story makes me angry because clearly they still have the mentality that it’s a mental thing and you should probably see a psychologist. Being poo poo’d away when you know something is wrong is such an awful feeling. I’ve felt it. You are not alone 💞

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      3. Thanks so much!! Like you refer to it’s hard enough to fight the illness without the stigma. I can’t afford a psychologist really. I have been before and he told me not to go to support groups because I wasn’t like them. At the time, I was really positive and actually thought this would go away. In a away it has, the muscles strains and sprains have turned into neuropathy. I have ulnar neuropathy, deteriorated disc- but they say not bad enough to operate. When the hospital refused to take my blood pressure manually and the auto machine took it my bp went up 70 points. 237/90. I’m going to ask for a permission slip not to have my bp taken but manually. Anyway thanks for the chat. Happy 4th.

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      4. Ugh oh no! I have neuropathy as well. Have they put you on lyrica/preglabin? I hate it but it works. I’m on the highest dose at the moment. Also an attempt to keep me comfortable during lockdown. Don’t talk about discs! I have terrible osteoarthritis in my neck and my fibro is very active there. You won’t believe the knots I get. I have to go for physiotherapy twice a week. Same with me… cant operate or even kill the nerves because it’s in my neck and it’s dangerous. They’d rather hold off on surgery till the very last they’ve said because it might put me in worse position.
        Holy moly! That’s some hectic BP!!! I have to chart mine because it’s low…but high BPs can cause strokes and stuff! I’m so sorry you’re going through this. Chart your BP. Keep a record. At the end of the day we know our bodies best. Thank you for the chat! Enjoy your 4th! None for me … I’m in South Africa 1😂💞💞

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