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I'm scared and need advice if your willing
1 Replies
reckaroo - June 18

Hello, first let me apologize because this is long-winded, but I need so badly to vent about what I'm going through and after reading much of these forums I think this is the right place. So here it goes; I have had every doctor I have seen tell me at one point or another that I am a medical enigma. As of now I have 2 MD's , 3 LPN's, 2 Orthopedic Surgeon's, a Gynecologist, a Physical Therapist, a Physiatrist, a G.I. Specialist and a Urologist all trying to figure out what is wrong with me.-Some working together, most not. My symptoms sound strikingly similar to those of Fibromyalgia. I had heard something of it on T.V. and it peaked my curiosity and need for answers so I have been researching it on the internet. After reading about it on several different occasions and especially after reading about it on this website and it's forums I am almost certain that I too suffer from this Syndrome. But I was hoping I could give you a rundown of what I have been going through before I really pursue this any further. Who better to help and guide you than the very individuals who have to suffer through it daily ? These incidences, symptoms and injuries have happened in the following order: I am 24 years old. Age 7-14; had incidences of extreme pain in my legs and arms never diagnosed. Age 7 and on; Extreme bouts of nausea coupled with occasional vomiting never diagnosed. Age 15 & on; in and out of hospitals on numerous occasions for intense back pain never diagnosed. Age 20; Sudden onset of pain, numbness and tingling throughout both legs diagnosed with Restless Leg Syndrome. Age 22; had two separate blunt force trauma injuries to both of my knees-diagnosed knee sprains-pain in both knees off and on since. Age 23; gave birth to my first son have had painful, numb, tingling groin; urinary incontinence, weak urination, frequent urination, painful abdomen and bloating since, coupled with either diarrhea or constipation, gas, cramping-not one normal bowel movement since( He is almost 10 months old). Age 24; two days after returning to work from maternity leave, out of no specific incidence had a sudden onset of incredible low back muscle pain-failed physical therapy due to sudden onset of sciatic nerve-like pain (that radiates all the way to my feet) made worse with therapy-thought to be a mechanical problem. 1 month after physical therapy started, I had a sudden onset of constant incredible pain and swelling in both knees-will not have firm diagnosis until arthroscopic surgery is performed due to no trauma or pathology shown on x-rays and MRI's. Since the knee injuries, giving birth and the back trauma I have experienced extreme fatigue, nausea, sleeplessness, intense knee pain and swelling, pain in my sides, right hip pain, pain in my arms, pain in my shoulders, pain in my neck, intense constant pain from my low back all the way into my feet, muscle spasms all over my body, my legs and arms get pins and needles and go completely numb from no specific incident, my skin hurts all over my legs to the touch, the skin on my arms get sudden isolated intense sensitivity to touch that hurts, burns and tingles even when my clothes touch the skin and my whole arm aches, I wake up every morning with pain, numbness and stiffness in my right hand pointer finger or thumb, I wake up soar, stiff and painful every morning in my back and knees, my weight has been fluctuating over the past months from week to week, I have been having intense heart palpitations, irregular heartbeat, shortness of breath, shallow breathing, difficulty swallowing (especially at night or laying down) since giving birth(I have had heart palpitations in the past during my menstrual cycle), I have psoriasis, urinary problems, I seem to have developed an intolerance to milk, irregular bowel movements, I have difficulty concentrating, memory lapses, my muscles feel weak(especially my legs and back), my legs become extremely weak when I just walk around the block, I feel like I am just in a fog all the time, I have anxiety and depression(I think the depression is worsening or a result of all that is happening to me) burning, dull, aching, stabbing, sharp, numb, tingling pain over a majority of my body, my only relief is sleep and even that is being taken from me. I have had blood tests, urinalysis, pap smears, bone dopplers, MRI's, x-ray's, all coming back normal-except for one set of knee x-rays that showed a 10 degree tilt in my patella's that has since been resolved with physical therapy although the pain has persisted. I soon will have two knee surgeries, a sonogram, and it looks like I will be going back to physical therapy. I have tried many different medications none of which has helped much except for Neurontin to a degree, I use a TENS unit, physical therapy has made symptoms worse in most cases and meanwhile everyday gets harder and harder for me. I am sick and tired of being sick and tired. I have had several different diagnoses that are changing every time I see a doctor but I have had several more questions that doctors just didn't have answers for. I am so scared because I don't know what is happening to me. I have lost my job, my independence, my quality of life and my ability to provide for and care for my son on so many levels. The absolute hardest part of this is the affect this has had on my relationship with my baby. I can't carry him outside because I'm scared my knees will give out again and I'll drop him on the pavement. I can't push him in a stroller. I can't go down a slide with him or push him in a swing. I haven't bathed him since he was two months old because it hurts too much (Don't worry he's not stinky,my family does it for me:). I can't go anywhere outside of the house alone with him for many different reasons. I can't kneel on the floor with him. I can't pick him up off the floor. I can't pick up his toys. I can't put him in and out of his high chair or toys. I can't carry him or hold him for long periods of time. I can't tell you how many close calls I have had almost dropping him on the floor. I want so badly to be able to do the things that most first time mothers can do-and I can't, I just can't and it breaks my heart especially since I don't know if the future will be more of the same or worse. So in conclusion I want to apologize to those suffered through this lengthy blog. I also want to thank those who did and thank you in advance for any responses I get. If anyone has advice I would love to hear it and appreciate it. If anyone can comment on my symptoms any similarities you might have with me, suggestions you might have, if in fact you think I suffer from Fibromyalgia or you think I'm crazy I'd love to hear it. Thank You again and May God Bless You.


VictoriaB - June 19

It certaintly sounds like Fibro but you need to see a Rheumatologist for the dx. Pain is a signal to tell you something is wrong with your body, It is very frustrating to be sick and have all the tests come back normal. Hang tough and let NO-ONE try to make you think you're crazy!! I will be praying for you!!



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