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Joint Pain with no answers, someone please help...


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Old 01-25-2008, 08:03 PM   #1
JessieJo24
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Joint Pain with no answers, someone please help...

My name is Jessie; I'm a 21 year old, otherwise healthy female. In October 2007, I started having severe joint pain in my hands and feet. After being diagnosed with a minor bacterial infection I started to develop dark red and purple spots on my arms, legs and stomach. I thought I was having an alergic reaction to the medication for the infection, so I went to the local walk-in clinic. After explaining to the doctor that I had been in for an infection two days before, and that I was expirenecing joint pain she diagnosed me with a disease known as HSP, or Henoch-Schonlein Purpura. She explained that HSP is a disease that is often found in younger children, but that it causes blood vessels to become inflammed and it can also cause some organs to inflame. Apparently, my immune system wasn't fighting the infection that I had gotten, and the HSP formed. The doctor explained that the rash would go away, the joint pain would end and I would eventually be fine, but that it could return if I contracted another infection of some sort. She then told me that HSP is fairly rare, and that I was only the second case she had ever seen in her career. She gave me anti-inflammatory medications and set me up a follow up with my regular doctor. I went to see my family doctor, he agreed that HSP was what I had, and gave me steroids to help with the pain. As the doctor said, the HSP symptoms went away. At my next appointment with my doctor, he decided to end the stereoids, which seemed like the thing to do seeing as I was back to normal. Days after stopping the steroids, the joint pain came back. This time, all my joints hurt; my hips, hands, feet, ankles, knees and even my jaw. I made another appointment with my family doctor; his solution; put me back on the steroids and let them take care of the problem. I started the steroids again, and they didn't do a thing. The pain was still there, worse at night... even to the point where my boyfriend had to rush me to the ER in the middle of the night. After the ER visit, my family doctor decided to run tests for rheumatory arthritis, lupis, lymes disease, lead and on and on and on. Everything came back negative. He decided to give me some pain medications and see if my body would fight off whatever it was that was making my joints hurt. Weeks later, I was still in pain. My family doctor decided that it was one hundred percent NOT HSP, and that I simply had a viral infection that wasn't going away. He suggested more tests, still no results, still no relief. Weeks passed and I was still in pain, only this time I noticed new symptoms, tiny bumps on the top of my head and my hair was falling out. After spending a day in pain, my boyfriend forced me back to the walk-in clinic. Again, the same doctor who originally diagnosed me with HSP examined me. She was one hundred percent convinced that I still had or was having symptoms from the HSP. She didn't know what else to do, so she set me up an appointment with a specialist, and took some blood for more tests. Again, pain medication was given to me and I was sent home. The second lymes test came back neither negative nor positive. It seemed like we may have finally come up with an answer for what I had. Three weeks past and again I went in for another lyme test, if it came back positive, I had Lymes Disease... if it came back negative... the search would continue. In the week I waited for the results I suffered joint pain, more hair loss, more sores on the top of my head and another terrible visit to the ER. Around 4 pm one day I started feeling major chest pains; after laying down and trying to rest I decided it wasn't going away. The ER was the only thing open by that time so I checked in. The doctors there ran tests and feared it was a blood-clot. Luckily, it wasn't... I was just expirenceing a minor problem where the ribs get irritated and push against the chest wall. They drugged me and sent me home. Today, I recieved the final results from my lymes test - negative without a doubt. I'm frustrated with this problem. The hair loss is embarassing, the sores itch, the joint pain is irritating in more ways than one, and my family is getting frustrated with ME! I can't play with my three year old son, I can't work my job, I can't clean or cook without feeling like my hands are going to fall off and even typing this is hurting like crazy. The doctors have even ruled out fibromayalgia... I just don't know what to do. My appointment for the specialist is comming up in early Feb. I just want to know if anyone else has any suggestions or knows of anything that this could possibly be... I'm sick of people, especially my doctor, telling me this is in my head... the pain is real, the hair loss is real... and the frustration is real. Please, someone give me something to go on.

 
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Old 01-25-2008, 08:26 PM   #2
Terri1967
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Re: Joint Pain with no answers, someone please help...

I feel for what you are going through. I have a few of the same symptoms as you do, joint pain, swelling, fatigue. I also have low oxygen levels and have been on oxygen full time for past 2 years. They have not figured out what i have either, other then pulminary fibrosis. but as for the pain and swelling they have no idea, all my blood test come back fine. I am supposed to see a RA specialist, even though blood work was negative for RA, Feb 28th. another entire month of severe pain, swelling and fatigue. I lost my job back in october of last year and i am now in process trying to get SSD. I have spent hours and hours online researching myself and can find hundreds of reasons for my symptoms but cant find just ONE cause for all the different symptoms.
The frustration is extreme and causes depression. I am newly married and have 3 teenage daughters. So I can understand your frustration. I hope you will find a doctor that will figure out whats wrong with you soon. as i know its very hard on family and relationships.

 
Old 01-27-2008, 10:40 PM   #3
legallyblondied
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Re: Joint Pain with no answers, someone please help...

Jessie....i do not remember when you posted this but please
do yourself a favor and go to another doctor and find a specialist who can help you...you are not getting any better and you need to find someone who can give you some kind
of diagnosis....get help and stop listening to the same people
tell you what you do not have ....you are 21 and you should not have all of these symptoms and no one knows what is wrong with you.....Karen

 
Old 01-28-2008, 11:22 AM   #4
JessieJo24
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Re: Joint Pain with no answers, someone please help...

Another thing that my boyfriend told me to put on here, even though I'm not so sure it could be related is our pet situation. Before I was diagnosed with the HSP we bought my son three mice as pets. After I had gotten sick I was holding one to clean it and it bit me, drawing blood. (The other mice had bitten me before and never drawn blood - a nip if for lack of a better word - and nothing happened) Two days later the mouse that had drawn blood on me got very sick and passed away. We didn't think anything of it, just that she had caught something and died, like most mice do... until a just this last week. My boyfriend and I bought three more mice for my son because he really adores them. Again, I was cleaning the mice and they would nip at me or chew on my fingertips no problem, no blood. One of the new mice bit me hard and drew blood. My instant reaction was to drop her to the bed, within second of her landing on the bed (which was a foot drop) she started convulsing and going crazy... she would lay on her back, shake uncontrolably and eventually she died within 20 minutes.

This is just a little weird to me because the other mice have bitten me without drawing blood and are fine... some of the others have bitten my boyfriend, drawn blood and have been fine... the two mice that bite me, drawn blood... die. As whatever I had worsened the time between the bite and the death time has gotten so short - assuming I had something to do with their deaths. Do you think this could have anything to do with whats wrong with me? Should I mention it to a doctor? Or is this just a straight up coinincendence that God has thrown at me?

Also, thank you ladies for your posts, I am going to see a speicalist Feb. 6th, hopefully that will bring some new answers.

 
Old 01-28-2008, 01:21 PM   #5
naklang
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Re: Joint Pain with no answers, someone please help...

Quote:
Originally Posted by JessieJo24 View Post
Another thing that my boyfriend told me to put on here, even though I'm not so sure it could be related is our pet situation. Before I was diagnosed with the HSP we bought my son three mice as pets. After I had gotten sick I was holding one to clean it and it bit me, drawing blood. (The other mice had bitten me before and never drawn blood - a nip if for lack of a better word - and nothing happened) Two days later the mouse that had drawn blood on me got very sick and passed away. We didn't think anything of it, just that she had caught something and died, like most mice do... until a just this last week. My boyfriend and I bought three more mice for my son because he really adores them. Again, I was cleaning the mice and they would nip at me or chew on my fingertips no problem, no blood. One of the new mice bit me hard and drew blood. My instant reaction was to drop her to the bed, within second of her landing on the bed (which was a foot drop) she started convulsing and going crazy... she would lay on her back, shake uncontrolably and eventually she died within 20 minutes.

This is just a little weird to me because the other mice have bitten me without drawing blood and are fine... some of the others have bitten my boyfriend, drawn blood and have been fine... the two mice that bite me, drawn blood... die. As whatever I had worsened the time between the bite and the death time has gotten so short - assuming I had something to do with their deaths. Do you think this could have anything to do with whats wrong with me? Should I mention it to a doctor? Or is this just a straight up coinincendence that God has thrown at me?

Also, thank you ladies for your posts, I am going to see a speicalist Feb. 6th, hopefully that will bring some new answers.

Man, that mice thing is strange. Since they are so small and sensitive to toxins, they are used to detect them in various environments. With joint pain combined with hair falling out, I really think you should have a full heavy metals screen done to check your blood and tissues for heavy metals and other poisonous substances. I hope not, but I don't think this is a coincidence. Once mouse dying after blood exposure, OK. But two? Hmmmm.
What kind of work do you do?

Last edited by naklang; 01-28-2008 at 01:29 PM.

 
Old 01-28-2008, 08:34 PM   #6
JessieJo24
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Re: Joint Pain with no answers, someone please help...

I work in Food Service at the local hospital. I've since stopped working (I am still employed, just on sick leave) I basically work with patient foods and in the cafeteria. It may not seem like it, but it's alot of hard work... the joint pain makes it hard to do anything... but I'm more not working for the sake of the patients and myself. Working in a hospital I'm prone to other diseases, especially since my doctor told me my immune system is not strong at all. I'm also prone to giving the patients a disease if I really do have something wrong with me. I'm looking into another job where I can sit at a computer in a call center, hopefully that goes through. I would hope that I wasn't exposed to something at work, but I know its possible... my doctor just doesn't believe that could happen.

 
Old 01-29-2008, 09:32 AM   #7
ellemae11
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Re: Joint Pain with no answers, someone please help...

JessieJo,
It is a long shot but have you had your thyroid tested. I had severe joint pain and finally convinced the doc to test me for it. As hypothyroid is also an autoimmune disease I wonder if you may have 2 problems, the initial HSP and then thyroid. It will make your hair fall out, fatigue, and muscle/joint aches.
Whatever the cause I hope you find out soon.

 
Old 01-31-2008, 10:50 AM   #8
JessieJo24
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Re: Joint Pain with no answers, someone please help...

Quote:
Originally Posted by ellemae11 View Post
JessieJo,
It is a long shot but have you had your thyroid tested. I had severe joint pain and finally convinced the doc to test me for it. As hypothyroid is also an autoimmune disease I wonder if you may have 2 problems, the initial HSP and then thyroid. It will make your hair fall out, fatigue, and muscle/joint aches.
Whatever the cause I hope you find out soon.
I've been tested for my thyroid already, it came back fine. I'm really at a loss here... I'm in so much pain but nothing seems to work or help. I'm on pain meds, but it doesn't take away all the pain, or my hair falling out. My appointment with the specialist is on the 6th, hopefully that will give me answers.

 
Old 02-02-2008, 12:33 AM   #9
JessieJo24
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Unhappy Re: Joint Pain with no answers, someone please help...

For the last few days now I've been having really bad headaches and not being able to sleep, the littlest sounds wake me up. Last night I even had to wear ear plugs, which I've never had to do before. Back when I was first diagnosed with the HSP I had originally gone in because I had been on my period for two weeks, the doctor found that I had a bacterial infection... which is what triggered the HSP. For the last two weeks I've been having the same problem, bleeding for a straight two weeks. I'm on birth control, but the bleeding still is pretty bad. The last time I bled this long is when the severe joint pain started, and the rash. I'm worried that the HSP might come back again. The doctor said if I got another infection, it would trigger it. I hope history isnt repeating itself. I'm still having joint pain, hair loss and now severe headaches, Does any of this sound familir to anyone, I'm still at a loss for answers, I really need some answers and it would be a joy to find someone with the same symptoms who has been diagnosed for sure and had been treated.

 
Old 02-02-2008, 05:29 PM   #10
aether4
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Re: Joint Pain with no answers, someone please help...

Quote:
Originally Posted by JessieJo24 View Post
I've been tested for my thyroid already, it came back fine.
Just curious... what tests did they do to check your thyroid? If a TSH test is all that was done they could have missed something.

 
Old 02-11-2008, 11:57 AM   #11
diannes
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Re: Joint Pain with no answers, someone please help...

Are you on any other prescription medications? Joint pain can be a side effect of some prescription drugs.

 
Old 02-12-2008, 10:03 AM   #12
ACOhio
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Re: Joint Pain with no answers, someone please help...

JessieJo,
I don't want to add to your stress, but it took 5yrs. of thorough testing and clinical physical assessments before the research facility where my specialist was, made my diagnosis' Rheumatoid Arthritis (RA)and Systemic Lupus Erythamatosis(SLE). But they treated my symptoms as they came up the whole time I was being "studied". Many places will say that this one test will diagnoses you, when if you research you will realize that it takes TIME, and putting your physical symptoms with repeated lab tests together to get the whole picture. Your labs may not always show the same thing each time you are tested. Then there are individuals who are what is known as Seronegative, meaning the usual markers in the blood tests will not show, or are so little off to be considered "normal". Keep trying, keep searching, you are your only advocate, and unfortunately it can be a long struggle. I feel for you. But many of your symptoms sound like an autoimmune(immune system) disease. Don't give up! I know its hard but please keep searching. As I said I'm not a dr. but I do know what it is like to KNOW something is very wrong and many tell you your tests are normal or its in your head, and knowing its not! As for family, I suggest that you keep informing yours of your symptoms, and your desire to find the answers, "That no-one wants you better more than yourself."
Praying for you,
AC

 
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