I am a 37 year old female. I am active and have been healthy with no medical issues all my life (besides headaches since I was a teen, but manageable). In early July this year I woke up one day feeling like I had sprained the fingers in my right hand. The day after I suddenly had full blown whiplash and could barely move. I was also very tired and experienced a couple "worst headaches ever". After two weeks I saw a doctor... they tested me for lyme, mono, rheumatoid arthritis
, gout, vitamin deficiencies, blood cell count and my ana. All came back fine with exception to vitamin D deficiency, elevated iron, low red blood cell count (I was told probably due to menstrual), enlarged red blood cells and high levels of protein in urine
My neck and hand symptoms continued and my back began to bother me after a few weeks. Not so much “back aches” it felt more like my spine was bruised or irritated. I was also experiencing drenching night sweats
off and on. By August my weight had gone from 132 in April to 103 unintentionally so I was referred for an upper GI. Upper GI results showed dysmotility of the esophagus
and reflux disease. My primary explained to me that it was an independent issue from my pain and put me on Dicyclomine
. She also told me the dysmotility was the cause of my weight loss
Due to a lump on the lower back of my head and the persistent joint, spine and neck pain
I was referred to a neurologist
. The neurologist decided to have me get MRI of the brain and cervical spine
(no contrast) to check for any sign of ms or a stroke because of my symptoms and a bit of “bell palsy in the left side of my face and went from no classes to needing classes all the time around the same time the hand and neck pain started. MRI came back normal with no sign of stroke and the lump is a swollen blood vessel. I was then asked to do an emg… that was normal too. My emg was done in mid September and after was asked to do blood work again. I believe they tested my ana again along with Rheumatoid arthritis, gout, arthritis panel and even copper levels. Again all came back fine. A week later I started experiencing visible swelling in my knuckles and a lump in my left elbow. My symptoms by now had been persistent with pain in my right arm, hands, wrists, elbows, knees and spine along with blurred vision
and off and on headaches. I did finally see my eye doctor two weeks ago because I was feeling like I couldn’t see out of my right eye as if I had a film of something over it and both eyes were often irritated. He did an exam and an xray that showed “retinal druzen”/”macular degeneration” in both eyes but worse in the right. I am now scheduled to see another eye doctor to have a different xray done to see the progression of the degeneration.
Because my joint pain was still present and all other results were ok my last stop was rheumatology. The rheumatologist
I saw was very short with me and made me feel awful about being there. She saw nothing wrong with my joints but did an exam having me bend my fingers, touch my toes, etc. She and my primary have now come up with a final diagnosis for me with the following (most of it I don’t even understand and sounds like it’s nothing):
Anxiety state NEC (by the way… I’ve never complained of anxiety)
Benign hypermobility syndrome
Myofscial pain syndrome
Lesion of upper extremity
I also saw a GI yesterday about the dysmotility of the espophagus and he told me there’s no way the hospital or my primary can diagnose dysmotility of the esophagus with an upper gi. He also asked me to do tool sample because a year ago I had blood in my stool and weight loss but only went to a couple appointments after being referred by a “walk in clinic” because I felt better. He mentioned bleeding like that can be serious and even sometimes be caused by cancer. I told him that my ana results were fine and they tested all my internal organs so my primary already ruled out cancer. He then told me he didn’t understand why they put me on dicyclomine and that saying cancer is not a possibility was a “bold statement” because there is no way they can know that with blood work. Really… I don’t think I have cancer, but now I am left feeling frustrated and do not know what to believe and who to trust.
I am writing because I’m at my wits end and feel like the door has been closed with the final diagnosis from my primary being “myofacial pain syndrome” and “hypermobility syndrome”. I have been a dancer all my life and have also owned a dance studio for a little over 10 years. When I got out of the military in 2002 I didn’t even get a primary care
physician until I this past spring. I’ve always been healthy and let things like colds and sinus infections run their course. However, now I am feeling suddenly like a complainer. My husband is concerned that something has been missed and I could possibly have a tick borne disease even though my lyme test was negative in July. I think he’s worried about tick borne because our dog had been showing signs of arthritis and mimicking my symptom’s since all summer. It was two weeks ago that I brought him into the vet after not eating for a couple days and he tested neg for lyme but because he had zero platelets and low red blood cells I was asked to take him to the local er vet . There they did more blood work and found he was positive for anoplasmosis.
I’m not sure what to do at this point. My doctor has recommended putting me on Cymbalta but I am not sure about taking a drug with side effects to treat pain rather than the underlying issue if there is one so I refused treatment. I don’t know if I made the right decision or if I really understand and should trust the diagnosis. I have decided not to pursue any additional treatment or make any other doctor appointments and just deal with the pain. Some days I’m fine, but some days I can’t open things with my right hand, some days my knees ache, some days my knuckles swell, some days I have a migraine, some nights I wake up drenched in sweat and have to shower at 3am. Some days it’s hard to teach dance…. But I push through it. Some days it’s hard to talk and I’m extremely scatter brained forgetting even a conversation I had an hour ago or what I was saying mid-sentence. But I guess if all of my lab work has come back fine in both July and September… It must be nothing. Am I mistaken or misunderstanding anything?