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Chronic pain and abnormal blood test results. Still no diagnosis.
I’m just wondering if I’m alone in this… I have had chronic spine and joint pain for many years. I get facet joint injections and epidurals that only help for about three months and I still require oral pain medication to even remotely function. This past year my bloodwork has gone from bad to worse with thrombocytopenia, pancytopenia, hypoglobulinemia, worsening swelling and discomfort of abdomen and flank pain (R>L), chronic headaches and migraines, very dry skin with blood red lower legs and feet that are extremely swollen. I can’t sleep due to pain, I can’t leave my house any more. Lying down for too long makes me hurt so badly. I can’t swallow because my esophagus doesn’t work. I get the most excruciatingly painful esophageal spasms… I feel like I’m being passed from one doctor to the next with zero answers for any of this. Can not one of these specialists connect any of these dots?! I’ve spent almost a decade in a living hell all while spending a bloody fortune trying (begging) for anyone to help me. I’m so tired of crying every day. The only thing keeping me among the land of the living is the pain medicine one of my local pain doctors prescribes for me since Mayo refuses to help with that PERIOD. My symptoms are worsening and so is my pain. Why can’t anyone help me??!!!
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kaki068, this can be an extremely painful condition. And it sound as though you've fallen through the cracks or chasms of knowledge. a thousand blessings on your local pain doctor.
Is it clear to anyone if you have a bone marrow disorder. Have you had a bone marrow biopsy. I understand that this type of biopsy is most painful, but may be necessary to determine cause. You may need bone marrow stem cell transplants. The best doctor to see is a hematologist. And it is best to see one at a cancer center. It may not be cancer (leukemia), but autoimmune https://my.clevelandclinic.org/health/diseases/25105-pancytopenia
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2 Reactions@gently Thank you so much for hearing my cries out into the void! I’ve thought about the bone marrow issue and am wondering if something is going on with my liver, too. My abdomen and back (right side especially) have started getting somewhat painful occasionally. I have dealt with spinal and hip pain for years that came on suddenly. My bloodwork has been abnormal for the past few years but no one has said anything about it. Infuriates me.
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1 Reactionkaki, reading this is a bit of a slog,
https://pmc.ncbi.nlm.nih.gov/articles/PMC9767793/.
but might encourage you to see a liver specialist (hepatologist).
May that fury energize your pursuit.
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4 ReactionsDo any of you with blood problems have very low red blood cells. I am below on red everything-cells, hemocrit, etc, and have been tested for blood cancer. I have so much pain, anything that would help, even for cancer treatments, I hoped might help, but no cancer. And really, I am grateful. I have also been in pain since the 1980's and don't have any answers. Joints, fascia, muscle, etc.
Thank you all for writing.
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1 Reactionbluehorse10, do you mind my asking how and when you were tested for leukemia? Have you been tested for autoimmune diesease and what of your liver testing?
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2 Reactions@gently Hi, gently. It was mentioned in passing about a referral to hematology. So far I feel like I’m being dragged through another round of every doctor having a very passive attitude about my increasing pain and concerns. I’ve been told “yeah, some of your levels are low (or high) but essentially you’re normal.” In one appointment I had, I was so fed up and disappointed that all I could do was burst into tears. My life has been destroyed by pain and other symptoms but I can’t seem to get one single doctor to take my pain and symptoms (I.e. abnormal bloodwork) seriously.