Costo or not costo

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Fed up going to GP and being sent away. Crippling headaches, dizzy spells, pain in chest, left leg and arm.

Various trips to A&E including one where I fell ill at work.

ECG and Blood tests come back clear as did D-Dimer and chest xray.

Dr doesnt want to listen to me. Went again yesterday and he's took me off my blood pressure medication for a week to see what happens as he thinks its that. But, it was just me being sent away again.

Does anyone out there have these symptoms and what was your diagnosis? Please help

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  • Posted

    I think you need to see a Rheumatologist ... your symptoms are different than Costo ... The crippling headaches and dizzy spells could actually be from low blood pressure ... hopefully taking you off the high blood pressure meds will help that ... the pain in your chest, etc. may be anxiety! Good luck! I hope you find answers soon!
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  • Posted

    Sounds alo t like panic attacks. Your best bet would be to get a second opinion.pray for the Dr and ask God to give you a knowable Dr with answers.some Dr.s don't know heads or tails about the illness.

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    • Posted

      Brenda you are so right ... My GP has Costo ... thank God he recognized my symptoms ... he told me it is the most NOT DIAGNOSED condition. The symptoms mimic so many other conditions you tend to think you’re a wee bit crazy ...  I have no answers but just know you’re not alone ... some people are lucky  and have a couple of flare ups and done ... I have pain every  day (some days debilitating ), others just annoying 🤨!  I do get anxiety which leads to panic attacks ... I do a couple of things ... I head for the Xanax ... calms me down ... if I’m somewhere where it’s not accessible ... I do the old fashion brown paper bag ... I breathe into it until I feel my body relaxing (10/12 minutes).  I’ve found you need to take control ... if you hurt, check out for awhile! The dirty dishes and laundry will be there tomorrow ... WHEN YOU HURT YOU NEED TO THINK ABOUT YOURSELF ... I also believe in meditation ... check out and feel better

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  • Posted

    Thanks everyone.

    I feel that my lack of diagnosis is bringing on severe anxiety. I have been left in a lot of pain both physically and mentally. As i have been taken off blood pressure meds for a week i feel this is further exacerbating my headache and feeling exausted. No pain management is making me miserable. I still have to go to work and i just watch the clock willing the hours to pass till i can go home and be ill in peace. I just feel so isolated and fear ill become a chronic invalid. I havent had a day in months where ive felt even 50% well. sad

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    • Posted

      You are not alone . Six years and counting . This thing goes in waves . And stress makes it worse . The symptoms have changed over time for me . I have all of

      Your symptoms. Crippling headaches as of late . The docs will not find some hideous disease . Most don’t even know about this.  I am still not diagnosed . Quick pointers . Stay away from gluten and diary. Eat only anti inflammatory foods. Seek acupuncture and pray ! Basically . Hope you find relief ! 

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  • Posted

    Hi Rhona, 

    Can you go for a bone density scan? I did and that was the only way they could see exactly where and how many cartridges were inflamed.  It's relatively quickly and easy. 

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    • Posted

      I'm not sure if I would get one if I request it on NHS.

      I was given Amitriptiline last week and it seems to be working for me (fingers crossed) so I don't think it's costo that I had at all.

      Day 6 on Amitriptiline and I feel 75% back to my normal self.

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