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Dealing with CFS-like symptoms + flare-ups of joint instability.

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fay91968
fay91968

Hello,

I have been dealing with a slew of symptoms for about 1.5 years now. I have seen many specialists and had many tests done with no definitive solution. I am finding it hard to accept that there isn't a known cause for my symptoms that has gone unnoticed.

Symptoms: I believe my issue started after I developed pityriasis rosea over my body. Dermatologist said that this happens in healthy people and I was given topical creams that seemed to work. But two weeks later I came down with a generalized exhausted feeling. A few days later I woke up with a weird brain fog where things felt hazy, as though I was under anesthesia and looking at moving objects felt like frames were being skipped and I couldn't focus. A few days later I went for a usual 1-2hr bikeride despite my symptoms and I felt even more exhausted. The next day my muscles ached all over my body. Then a few days later I developed migratory pain between my joints and they were all clicking and popping with every movement. The pain then became really bad in one knee, then the next day the pain switched to my other knee. I then developed bad photosensitivity and I needed sunglasses. At this point I was staying in bed because of the compounded symptoms of fatigue and pain. A few weeks later the pain in my joints and muscles began to improve but a headache, muscle twitches and brain fog were here to stay to this day. Over the next year I would periodically get flare ups of my joint + muscle pain where my joints would start to make loud popping sounds and become unstable. Also I noticed that a pityriasis-like rash and a more intense headache would recur and coincide with these flare ups. The pityriasis rash that recurs is not as extensive as the first occurrence and I usually only get 2-5 lesions.

I have undergone so much testing and gone to a rheumatologist, 2 neurologists, and an infectious disease doctor but with no definitive diagnosis. I have had a brain MRI, autoimmune antibody testing, rheumatoid factor and other inflammatory markers, lyme disease and several viruses, vitamins and other metabolites as well. I am wondering if anyone out there has experienced this sequence of symptoms and dealt with a similar chronic illness. If so, did you figure out what it was? Did you recover? Is there anything you think I may be missing?

This disease has overhauled my life and made every day a real struggle just to get through. Any help would be greatly appreciated!

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1 Reply

  • LoobyM
    LoobyM fay91968

    Edited

    Hello Faye, i too have suffered a similar journey although not identical to yours.

    Mine started on Nov 20 with pain when getting up from a seated position. This then spread to right hip and lower back and the pain was unbearable, but it wasnt muscle pain like you experience from a work out. There is just no let up or recovery from it and pain relief just doesn't cut it. I then started with dry eyes and dry mouth. Muscle spasms, twitches and cramps, which I still have 2 years later. Difficulty swallowing which is progressing and causing me to regurgitate after eating. My muscles also pop and crack like yours. I have tremors, hypnic jerks, my speech is sometimes slurred. I also have a frozen shoulder (?!) These are just the major symptoms. I experienced fatigue early on but am much better with that now. I have seen 2 neuros, 1 rheumatologist, 1 orthopaedic consultant. I have had a full MRI of brain spine and neck, all clear. I've had an xray of hips and pelvis, all clear. I've had an emg, all clear. 2 clinical work ups with neuros. Numerous blood tests, all clear.

    Moving around and completing day to day tasks is painful and often challenging. My bones crunch, grind and my muscles pop

    My shoulders feel like they're coming out of their sockets.

    Pretty worrying stuff. The first neurologist said it was anxiety!!!

    The rheumatologist asked me what I thought it was and diagnosed Fibromyalgia, even though fibro isn't progressive and many of my symptoms are. The 2 neurologist said it was fibro and I had to learn to manage my symptoms and have some CBT.

    I feel for you. I'm going back to my GP on Wednesday as my right hand is now losing dexterity and its feeling a little clumsy, I'm also seeing some atrophy in the thenar. Again worrying stuff.

    I know none of this helps you.

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