Lots of symptoms and no diagnosis

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Hi. I am 44. I have for a while had fatigue and all sorts of aches and pains. About 3 years ago I had swollen lymph nose behind ear and then swollen groin nodes with putting edema in foot they said it was lynohedema but no reason why. I had ct scan and multiple ultrasounds and they showed the nodes enlarged but not worrisome and then I finally had a pet scan that was negative. I had muscle fatigue even my skin hurt to touch my husband would poke me and I could cry it hurt so bad. Fast forward. About two years ago I lost some weight I have always been overweight. I felt great but gained it back. And probably last 6 mo felt crappy. My left hip and back were in excruciating pain end of summer I finally went to PT. I do have a bad back anyhow. But every day something different hurts whether my bones my joints my skin headache stomach etc. I always push through. But I feel like I'm walking in sand half the time. Last month I got a UTI and pneumonia. I had an awful time recovering from it and the UTI came back. I was started on a med that I think I reacted to with severe anxiety. And my blood pressure spiked big time. Now I feel mostly myself but I still have joint pains here and there muscle here and there. My skin feels like it is burning at times. My head burns. My scalp itches. Sometimes when I breathe through nose I hear a popping sound. I am paranoid of being sick like I was a month ago. I feel I may have had anxiety to some degree but avoided it if that makes sense and now I can't avoid it anymore. I get nervous to the point I feel I am gonna pass out doing anything even getting my hair done. It's crazy. I feel I am super sensitive to a lot like when I was in th ER I can smell and taste the flush through my IV. My eyes are dry. I have headaches. My stomach is off my skin is itchy. I have all sorts of complaints. My face has been getting this crazy rash and hives on neck. My dr sees these symptoms and is concerned. I have been tested for every known thing by him and everything is negative so far I've had more tests blood scans etc this last month. Does this sound like fibro? I though I had it with the episode 3 years ago and my dr said maybe mild. I sometimes has cool sensations throughout my body also. I can go on and on sometimes I think I'm crazy Also. Amy input would be great.

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  • Posted

    Hi thanks for responding. You sound like me in that it seems it's something new that hurts every day. I too have itchy scalp, tingling in legs and feet. My skin is so sensitive that I can't even shake hands. I don't know if that's a result from having cordisone injections in my knees as I was told it is a skin thinner and combined with baby aspirin my skin (only in arms) is so painful. I get bruises on my hands even from a handshake or a little bump of anything in my house. I'm sure my husband thinks I'm a hypochondriac with so many aches and pains. A rheumatologist said it was fibromyalgia and increase my meds. I'm going to a neurologist and maybe he can explain any reason for my burning hand and arm skin.

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    • Posted

      I also hate to complain so much but I feel like there always a new issue. I usually don't voice my concerns much I just deal with them. I also think I have reactions to meds

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  • Posted

    Hey Lisa. You're not crazy. I know that they say fibro may be linked to some sort of trauma but research is now showing that it can develop due to autoimmune illnesses as well.

    Like you , I was ill and finally diagnosed so I lost some weight and was doing better. Got sick again and gained the weight back and my symptoms came back with force.

    I had been exposed to my neice when she had an immunization shots. My measles numbers came through the roof even though I didn't have it. And so did my epstein bar. From what my doctors figured out, my body was trying to fight the exposure to the measles and reactivated my epstein bar or glandular fever. Since my immune system couldn't fight both it picked one. My glands swelled, had hives, fever, fatigue and sore throat.

    After a few weeks, I started having increased pain, muscle weakness, skin sensitivity, stomach issues, anxiety, forgetfulness, overactive bladder, neuropathy in hands and feet etc.

    I'm slowly getting myself back through diet and supplements but it's a long journey. I've been plagued with chronic sinusitis since Halloween. It's a long road to recovery. It feels like I'm on a carousel. Just going round and round but can't get off.

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    • Posted

      I was diagnosed with celiac sprue and as an autoimmune disease I was told fibromyalgia comes with it as well as several other autoimmune diseases. I have osteoarthritis too, need knee replacements but have refused thus far. I also have sinusitis which has damaged my lungs from swallowing the drip contents and onto my lungs. So I don't know if it is true my skin hurts because of fibromyalgia but I must find out soon else I'm going to sit down and cry. lol

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    • Posted

      I know they say now a lot of dr say it must be something automimnune. I was tested for lupus it was negative. I sometimes feel "swollen" too although I don't look puffy with edema or anything. I wake up and feel ok then things start and like I said it's a different ache everyday even joints. A lot of times it's my left arm and I can barely lift it and have no strength in it then the next day it's not so bad. I also have geographic tongue and I read somewhere that goes along also? It just seems I have something and sometimes I feel tingly I think my body and nerves are super sensitive. I really don't want to take any more meds I am down to one med for high blood pressure that's been recent other than that I had a reaction to the singulair so I'm really looking to get back to myself and my "normal" so I guess I'll just go on like I've been but I am going to ask about fibro. Thanks!!

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    • Posted

      We've all been through it. Years of multiple tests and doctors. Lupus, Lyme, graves disease, it's never ending.

      While there is no cure, you can manage it. I had issues with the meds and have taken a homeopathic way of treating it. I know you are frustrated but chances are someone on this site has had it or tried it. There are several options you have. Don't get defeated before you get diagnosed. Just keep going and we are here to help

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  • Posted

    Lisa you sound like me several years ago. I went crying to a doctor telling him my scalp itches, my skin burns if it's touched, my bones and joints hurt, and I couldn't sleep, etc etc. I had so many complaints I felt like a hypochondriac believe me. The doctor listened to me rattle on and on and then said you need to see a rheumatologist - I think you have Fibromyalgia! I went home and search on the net to see what Fibromyalgia was and was shocked. I called my husband to read what it said and said "that's you." Well I went to the rheumatologist and he said he could tell I had Fibromyalgia. He touched here and there to confirm his diagnosis. Told me I wasn't crazy and prescribed generic Elavil, which is an anti-depressant and said they don't know why it works but it does. I had the prescription filled, took my first pill that night and couldn't believe how most of the symptoms went away and after a month they were all gone. I still take it today. Every once in a while my skin hurts so I increased the ant of pills I take. I take three now but I knew a woman who took ten. All that said, see a rheumatologist and hopefully he will give you something to make it all go away. I didn't have any side effects and have been perfectly safe. Hope this info helps.

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    • Posted

      So another weird symptom I have is I feel like vibrations in me. It's crazy to describe when I breath I will feel like a vibration. Almost like I have a pager or cell phone me but I don't. Sometimes I get weird sensations internally and then the next day they are gone. I have had some of these things happen randomly over months to ears but it seems in the last two months they have all come together. I also notice that I will start to get nervous out of the blue for no reason and then get myself a little anxious. I just finished my testing I have literally been tested for everything and all tests are negative. My dr has pretty much said that I had an immune response to something no one knows what but I do continue to experience the muscle aches joint especially my hips and upper back are always hurting my left elbow is awfully painful. I don't really complain much about most of this stuff. I have no follow up appointment and everyone says you are fine so I just move on with my daily grind.

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    • Posted

      I know your doctor ruled out everything else, but did he give you a referral to a rheumatologist? I don't get the vibration feeling but my left elbow is extremely painful. It's one of the tender points of fibro.

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    • Posted

      Well I was going to go to one we only have one locally and he's not the brightest bulb. Pretty much says nothing is a big deal. But anyhow my double stranded DNA was negative for lupus so he said he doesn't want to see me. Yeah my left elbow some days is excruciating pain and it radiates down to hand other days it's painful but not as bad and at night at times it goes numb. It's crazy.

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    • Posted

      If you are unable to see a rheumatologist to diagnose, then what about a neurologist? I know rheumatologist usually diagnose and treat fibro, neurologist have also been known to do so. Stay strong. You are not crazy.
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