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New member looking for support

Sep 24, 2015 5:17 AM

2 and a half years ago I woke up with a swollen left knee. After many different tests they diagnosed me with dead bone at the top of my tibia and complex regional pain syndrome.
Gradually my pain has become worse and worse I'm no longer unable to work
2 years later I'm back at square one and they don't know what's causing the bone to break down and the soft tissues surrounding it to calcifiy
I'm at my wits end and just don't know if someone can recommend something other then meds to deal with the pain because they are not working! !!

Sep 24, 2015 6:22 AM

Go see your rheumatologist or orthopedic dr. They should determine exactly what you have

Sep 24, 2015 6:36 AM

I have ...
I have had another biopsy but that still came back inconclusive they have said that they haven't seen anything like it before with my scans

Sep 24, 2015 6:45 AM

That is so strange how they can't figure what is wrong and what is causing it. Do you have calcium in your body? You should go see another Dr and continue fighting it till they can find what is causing it. A Dr should know so.ething about your diagnosis.

Sep 24, 2015 6:48 AM

I know I'm currently seeing a microbiologist to try antibiotics for possible chronic infection but even that's a guess because they couldn't get anything to grow from the biopsies.
I'm only 26 and I've pretty much lost my skip I'm not the same person,I'm not the person I should be.
I have good support at home in my parents and partner and they are constantly fighting for me to see new Dr's.

Sep 24, 2015 6:50 AM

Yep. Keep on seeing your doctors. Find a good one if y can. You are so young to go through all of this

Sep 24, 2015 6:51 AM

Find a good Dr and specialist.

Sep 24, 2015 6:51 AM

Also make sure y see your rheumalogist. That is important

Sep 24, 2015 6:55 AM

Sounds awful, I really hope you get answers soon!

Sep 24, 2015 7:04 AM

kdub, welcome to the group. I am so sorry to hear that you are going through all of this and still have worsening pain and no answers. When I first started having pain 24 years ago, I went to several doctors to try and find out what was wrong. My pain started in my left shoulder. I went to neurologists, rheumatologist, Orthopaedic doctors, etc. They were all puzzled. I had scans, MRI's with and without contrast,
Nerve Conduction Studies (which showed I had long thoracic nerve palsy), the problem continued to get worse and so did the pain. Went to more of the same kind of doctors and kept being told I was a mystery and that my scans, X-rays, MRI's were all normal. Well after two years, the problem was constantly with me and beyond what I could deal with and I was losing motion. I had a major surgery to have the shoulder stabilized and from there it just got even worse. So, present day, after many doctors and no answers, I finally got diagnosed with several issues. I have Fibro, degenerative joint disease, degenerative disc disease, CRPS/RSD, TMJ, spinal spondylosis, cervical spondalytic myelopathy, scoliosis, sciatica, SI Joint disfunction with fractures, lordosis, Grave's Disease, hypothyroidism, depression, anxiety and a few others I can't think of right now. The point is, never give up. Read!!! Look on reputable websites like Mayo Clinic and see what it says about your symptoms. Keep a journal of what causes your pain to be worse and what helps. Also, know how to judge your pain levels when you are doing things. Find more doctors and keep pertinent medical records with you when you go. Write down any questions you have. If you don't understand the answer or don't agree with it, question the doctor how he/she came up with the diagnosis they give you. This is a wonderful app and community family. It's a great place to come and get advice, information, support, to vent or whatever you need. There are no judgements here. We are all here for different diseases and diagnosis but we all share the burden of chronic pain. I hope you find the support you are looking for here with us. I know for me, it's been a Godsend and I have made several very strong bonds and made some really wonderful new friends. Hang in there and keep on pushing to find help even if you have to travel a bit to find a doctor that listens and goes the extra mile to help you. You will be in my prayers and keep us posted as to how you are doing. 🙏🏻🌻

Sep 24, 2015 7:08 AM

Thank you for that it's nice to finally speak with people who understand what I'm feeling.
If this next lot of stuff doesn't work I have a family friend that wants to start a fund me page so that I can go to the states to see what help I can get because here in Australia I have pretty much used up all the resources available

Sep 24, 2015 7:17 AM

kdub, just remember that you are never alone. We are all here to come to your aide when you need it. I have read threads in the community where there are a lot of folks on here from Australia. I am sure you will connect with them when they see your post. We definitely DO understand and sympathize with all who join us and are dealing with such pain and trying to get answers. Good luck.

Sep 24, 2015 7:34 AM

I'm from Australia too.

Sep 24, 2015 8:27 AM

See, I told you!! LOL... 😊

Sep 24, 2015 3:09 PM

Welcome to our family, there are a lot of caring and compassionate people here. You can rant and rave all you want this is a no judgment zone. Someone is always here. Sending prayers and hugs.

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