Discussions By Condition: Muscle conditions

Horrible pain in joints and muscles.. mainly in legs and hands.. help :(

Posted In: Muscle conditions 4 Replies
  • Posted By: mandi1369420
  • September 12, 2010
  • 08:38 AM

Hi there! I'm new here and wanted to shoot a question at you guys..

I've always experienced deep leg pain, my parents used to call them growing pains when i was younger. Now my muscles and joints all over my body hurt, and it's a similar pain sometimes. Mainly my ankles, elbows, knees, hands, and toes hurt. I'm honestly not even sure what type of dr to see, since i've been told it could be a nerve thing, or muscles, or back. I saw a rheumatologist, since my mom has RA, but I'm looking for a new one since he honestly just acted like I was faking the pain. What would be the point? it used to be tolerable, but it's now getting so bad that I'm having trouble walking and I'm only 22. I have 2 toddlers to run after and it's becoming increasingly difficult. i was diagnosed with fibro, but simply because he said he didn't know what it was.. I'm honestly afraid of becoming crippled later in life, because it's getting worse quickly. Here are some details;

-Pain in almost every joint in my body, but worst in my legs and fingers.
-Muscle pains and weakness my legs, feels like a 'charley horse' when i stand from a sitting position, or use stairs.
-Stiffness of joints
-Frequent headaches
-Hurts the worst when the weather is bad (cold, rainy)
-No skin rashes
-No eye problems
-Recent weight gain
-frequent pain in soles of feet
-It's painful to wear normal shoes most of the time
-I frequently have sinus problems

-Positive RF factor
-Positive ANA, 1:160, speckled
-negative Lupus screen
-sjogren's syndrome was ruled out, no dryness of eyes.
-Raynaud's disease also ruled out, no bluing of extremities
-Mother has RA
-High blood clotting factor
-negative anti-dna test
-Doctor told me that he didn't think it was RA, but I'm still going to get myself tested for it, just in case.
-Dr also ruled out lupus due to the fact that I had no butterfly rash, and my lupus panel came back negative.

Any help would be wonderful. Thankyou!!!

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4 Replies:

  • I feel your pain.I am 22-years-old, healthy (don't smoke or drink and take good care of myself), am a professional dancer and choreographer (so I am very active), and I can pin-point to the day (where I was, who I was with, and what I was wearing) when I experienced my first "flare up." I remember it started in my left arm, mid-joint or elbow, then moved to my wrist, then my shoulder, and finally my fingers. I can best describe the pain as contractions. There was a constant aching, but if I moved my arm, even just a finger, the pain would blow way past 10 on a scale. Over the past few years I have experienced the same pain in every extremity, the worst being my right leg (it got so bad one night I had walked to the sink to brush my teeth before bed and then could not make it the ten feet back to my bed--I collapsed due to the pain). Every time my limb will turn either deep red or almost purple, as if circulation was cut off, and the pain will last up to 24 hours.Along with these symptoms:-ulcers in my mouth and nose (I once went to the dentist, because I had a total of four ulcers in my mouth and one in my nose at the same time, could not take the pain anymore and thought I had an abcess (spelling?) to which he replied my teeth were great and that it looked autoimmune)-hair loss-rash-I was dancing in a show once and when we were doing the technical lights (four hours sedentary under harsh lighting) I broke out in giant hives-hives or rash when in sun-the same charlie horse feeling that you have--only after the major pain has gone away...almost as if I was sore from a workout, but without working outI have been to many doctors, including a Rheumatologist. My GD is incredibly concerned, but does not know what is wrong. My SED Rate is high, but other than that all of my bloodwork is fine. My mother has Crohn's Disease...so when I went to the Rheumatologist that is all they looked for, but I have none of her symptoms and her joint pain came way after the bowel symptoms (my joint pain is the problem). That same doctor said I was depressed and I just needed more exercise. I dance 12 hours a day on top of normal workouts--I can't exercise much more. I came on this website 2 years ago and am still having trouble and sorry about the rambling, but know that you are not alone. I know the feeling of just wanting to know that you weren't crazy and to the point where you don't care what it is you just want to know so that they can help you. Keep your chin up and eventually you will get your answers whether through medicine or yourself.P.S. Stress free life style helps...find a vent. I have found that when I get worked up, stressed, sad, whatever, I either go read or draw to calm myself. The more "emotionally" calm your life is the lesser the pain will be. Also, on really bad days, when the pain is unbearable, it actually really helps to have a friend, lover, family member, who understands to either be there or be a shoulder to cry on. On those days just let all the frustration out, because it might help you get through it a lot better.From someone who knows.
    Anonymous 42789 Replies
    • October 15, 2010
    • 07:23 AM
    • 0
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  • Mandi have you found out what is the matter? I having been experiencing a lot of the same symptoms and have been getting worse the past five months. I got to a point to where I can no longer do my grocery shopping unless I use the motorized carts as the pain gets so bad in my legs. I have had headaches for the past 7 months and now past two months I have migranes so bad I have had to go to ER. I have been signed off by rheymotology, hemotology, pain clinic, and with neurology right now.
    Sammylou 1 Replies Flag this Response
  • Have any of you been tested for the genetic disorder Muscular Dystrophy?
    sadly my father passed away because of this disorder after bein misdiagnosed for 25 yrs.
    Muscular dystrophy was found in tge early19 80, s so there is still little known about it. slso two of my nephews have this dissorder me myself im a carrier of gene what inflicts MD.your symtoms strongly suggest you could have this. Ask your GP to refere you for genetic testing. This disorder dnt cure if left undiagnosed is fatal.
    Anonymous 1 Replies
    • August 31, 2014
    • 01:05 PM
    • 0
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  • Tell Your GP You want gentic testing for MUSCULAR DYSTROPY dne asap.
    look Musclar Dystrophy up as what u describe stronglysuggests you have this.
    my dad was misdiagnosed for 25 even now ther isnt much known about the disorder. Not one doctor in my local surgery knows anything of or about this even the staff of an entire hospital knew of it or how to treat it. This is a serious genetic disorder with no cure left misdiagnosed can be fatal I urge you to tell ure GP asap u want genetic tests.
    Anonymous 1 Replies
    • August 31, 2014
    • 01:20 PM
    • 0
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