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Jun 13, 2016 7:16 AM

Does anyone suffer with a strange feeling throughout their body, in addition to the other pains? It's kind of a fluey, generally unwell feeling. I liken it to a whole body migraine. I'm new here and hoping to find people who understand!

Jun 13, 2016 8:26 AM

Sosore, yes I have felt what you are describing, mostly when my fibro &/or Sjogrens pain is flaring up. I was dx with fibro in 2012 even though the symptoms started in 2007. After they started treating my fibro my pain kept increasing our flaring and reducing, but the pain level was at a 7-8 daily. I kept telling my docs that something else had to be going on. My bloodworm kept showing elevated inflammation, which they kept contributing to OA. It wasn't until an oral rash wouldn't clear up for 5 mos that the rheumy doc had an ENT doc do a buccal tissue biopsy, that we found out I also have Sjogrens (Autoimmune disease). After I was put on the plaquenil my pain dropped to a 3-4 avg daily pain. Now it's much easier to feel the flares. And yes, it's like getting the flu; achier than usual, tired to lethargic, headaches more, general unwell feeling with increased pain & sensitivities. I was dx with hypothyroidism a month after the sjogrens, and they along with fibro all fall into Autoimmune issues. Someone else on here told me that once you get one AI issue you are bound to get others. And for many sjogrens is primarily dry eyes, noise, mouth, throat, & skin. But it can cause problems with internal organs, as it seems to be with me; joints, GI tract, lungs.

Follow your gut instinct and if you feel the meds aren't working out that something else may also be going on, let them know. Be vigilant in tracking each & every symptom no matter how trivial it may seem. Listen to others here and research anything that you think may help. Be open to trying various methods to control your pain, as not everything works the same for everyone. Just because some have bad experiences doesn't mean mean everyone will. I have an allergy list to medications that covers a full sheet of paper, mostly pain & psych drugs.

Hugs & prayers as you find your best coping methods. 🙂💕🙏🌼

Jun 13, 2016 9:14 AM

Thank you for replying! Although I have only recently been diagnosed, I have been going to the docs 'complaining' of various symptoms such as joint pain for 14 years. It has been insinuated that it's psychosomatic. Nonsense! Although when good spells occur and I feel fairly well, I end up doubting the entire thing. I'm struggling to accept it, and it's difficult to know how to manage symptoms when every day, even hour to hour is different. It's also difficult explaining to people who don't have it! I've literally just come back from my first massage, and the therapist said she had never worked on a back and neck as tense and knotty as mine. She said she isn't able to help and has referred me to a sports masseuse and told me to have my doctor take a look. Such fun! Haha :)

Jun 13, 2016 10:15 AM

Oops, I meant to say the fibro, Sjogrens, & my OA are all in the rheumatic diseases category, while the sjogrens and hypothyroidism are Autoimmune.

Jun 13, 2016 10:31 AM

I completely understand. I quit work in 2010 for unrelated pelvic mass, which in itself has caused additional chronic pain conditions as well as more surgery. That's when my fibro really took hold, trying to recuperate from the surgery. As my health snowballed downhill it caused depression & anxiety to return, which is had under control since 2000. I did not accept that my life was forever changed, and I'd never return to work until 2014. I grieved my losses of the life I once had. I'm now 54 but feel 74+. I've learned to listen to my body's signals; when to work at something, when to rest, when to stop completely, and what I'm no longer capable of. Having this pain app to journal daily is very helpful. Not only can I make notes from our before appts, I can share it if I wish, and I can identify patterns of my flares, learning triggers & what helps reduce pain. It's taken many doctors to find everything going on; some I needed second or third opinions; others I changed docs completely. Anyone healthy, those without chronic conditions or chronic pain, they will never truly understand. My hubby of 34+ years understands more now, but every now and then it's like he just can't get it. Finding good doctors who believe in you and support you is primary key! Having a support system here helps. Do a search for "fibromyalgia" and you will find many discussions, a lot which have links. You'll see everyone's suggestion, which vary because no one treatment works for everyone. I've learned that taking too much meds can cause rebound pain, and my docs have worked to get me off anything (daily) that can be used PRN. I wish you all the best as you learn your way. My OA that's been present since the late 80's is all in my spine and now attacking my hips and knees. It's as painful as the fibro, but in a different way. Hugs & prayers! 🙂💕🙏🌼

Jun 13, 2016 10:43 AM

Check out the post "Who has fibromyalgia?" by Zam133.

Jun 13, 2016 11:57 AM

Thanks for replying folks. It's great to know there's people out there who 'get' it :) x

Jul 31, 2016 2:56 PM

Sosore, I feel you loud and clear. I generally get that feeling of being unwell with nausea and pain, fatigue, irritability, etc. I have it worse when I'm flaring and even worse now that I'm menopausal. Freakin hormones. Welcome aboard and I hope you find the support and comfort you need by hanging out with us. {{{Hugs}}} 💕🙏🏻🌻😊

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