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MissMandaBear

748d

Hi I’m very new to this and was looking for some advice. I hate to be that person to google symptoms and seem like I’m a doctor all of a sudden, but I’ve been dealing with a lot of muscle aches and pain and joint pain pretty much everywhere. Fibromyalgia seems to match me damn near 100%, if you’ve been diagnosed with it, how did that go for you? How do you treat it? Feel free to ask me any questions that might help you give advice. Thank you :)

    • Zenon

      748d

      Hi hi, I was diagnosed with fibro about 3 years ago but was feeling symptoms (severe fatigue, muscle and joint pain, pins and needles in my hands/arms/feet, costochondritis, migraines, becoming easily injured or very sick from something minor like a cold) for about a decade before a doctor finally diagnosed me. Before that, most of my doctors brushed me off. Before they diagnosed me with fibro, I tested super super low for vitamin D and B12, and those deficiencies can apparently cause symptoms like fatigue and muscle pain, so I got on supplements. When that didn’t help, and they ran the gamut of other tests, they figured out it was fibro. If you haven’t had a general blood work up done and have access to that, I’d recommend starting there. I generally try managing my symptoms through prioritizing self care and reducing stress as much as possible. It’s really trial and error to figure out what works for you, but I hope this helps and I’m happy to answer any questions you have 💕

      • MissMandaBear

        748d

        @Zenon what tests did they run? And what kind of doctor did them?

        • Zenon

          748d

          @MissMandaBear ugh that is so frustrating when the bloodwork doesn’t show how you’re feeling. If you still have the results of your bloodwork, it will show what they tested for. My primary care doctor tested my thyroid, did a CBC (complete blood count) panel which tests many parts of your blood that could indicate a wide range of health issues, they checked for a bunch of vitamin deficiencies (D, B12, iron, zinc, copper, etc). I also went to a rheumatologist who checked ANA (antinuclear antibody), CCP (cyclic citrullin peptide), rheumatoid factor, HLA B27, C-reactive protein, and sedimentation rate. All my rheum tests came back normal so I don’t know a ton about them, besides that they check for various inflammation markers or signs of infection. Did they check your vitamin D/do you remember if it came back normal? Mine was really low (my level was at 7) and going on supplements did help a little with some of the pain and fatigue.

      • MissMandaBear

        748d

        @Zenon thank you! I’ve done blood work twice, not sure what exactly they tested for... but it all came back clear, I’ve been having severe fatigue as well, and just overall body pain, it’s so much it’s hard to pin point what exactly is going on. I just started b complex and folate vitamins but it really feels like I’m getting no where until I see the rheumatologist 😕

    • MiloVazquez

      748d

      For me my hands are on n off with what you described burning shooting pains from wrist to finger tips some knee pain and joint pains in elbows shoulders neck all I can say is embrace it and for my hands I fill up both sinks one hot water one ice cubes with water so I dip in hot a count to 30 seconds going back n forth until pain subsides wished I could dip my whole body miss having a pool n spa use to do this and it helps for a good nights sleep

      • MissMandaBear

        748d

        @MiloVazquez that’s exactly what I feel in my hands, I’ll be sure to try that thank you!

    • JustRachelle

      748d

      Heyyyy, so I’ve had fibromyalgia for 6 or 7 years. It started with tingling and burning sensation in my hands and feet.. ummm over the years I’ve had months at a time where I felt good but for the most part I’ve been a mess with pain and other symptoms.. last year it seemed to get very severe and I’ve been stuck in this since October.. I’m constantly dizzy and lightheaded, chest pain frequently, EVERY joint hurts, muscles twitching/spasms, pain in my outer thighs, pain in my inner hips, super blurry vision, double vision even with my glasses at times and a lot more! All test come back good so my rheumatologist says I still just have fibromyalgia.. oh & I just developed Raynauds Syndrome 🤦🏽‍♀️

      • Zenon

        748d

        @JustRachelle reading your story I’m literally blown away by how much I relate to this - especially including the awful thigh/hip pain and tests coming back normal and my rheum/primary care/GI (also have crohns) saying all my symptoms are likely resulting from fibro. And I’ve also been in a flare since October 🤦🏻‍♀️ if you ever need support or want to commiserate my inbox is always open 🖤

        • JustRachelle

          748d

          @Zenon thanks so much definitely & you can message me as well

      • MissMandaBear

        748d

        @JustRachelle oh wow! For me it was symptoms of carpal tunnel and that ruled out with tests, I have good days and bad days, hip pain, knee pain, ankles, wrists, elbows, shoulders, neck. I just have no clue what to do or what is going on, and I don’t have my rheumatologist appointment till late June :(

        • JustRachelle

          748d

          @MissMandaBear I know it seems far away but hopefully they can figure out something when you go. You can also call to check if they have a cancellation list to out you on so if somebody cancels an appointment you can get in sooner 💕

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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