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Mixed Connective Tissue Diease

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GreenThumbz
GreenThumbz

Hello everyone! I looked on the discussions and didn't see anything related to what I have been going through so I was hoping there is someone out there that can relate. Forgive me for it taking so long to explain. 

In January of 2017, I had a major surgery on my left foot/ankle. It did not heal so in late October 2017, I had a complete ankle fusion. I was told that if I didn't have this surgery the screw holding my heel bone together would eventually weaken and probably break. Between these surgeries, I developed complex regional pain syndrome, and a fibroma attached to my plantar fascia tendon and had severe pain and nothing I did helped. I spent 1/4 of last year non-weight bearing and was miserable. I have damaged my knee due to the weight gain and all the stress from not being able to bear weight on it. So 8 weeks ago I had surgery on my knee to scrape arthritis and to repair 2 tendons. I was told that we needed to get my knee strong enough for my next surgery/surgeries since the fusion still hasn't healed and they need to remove the fibroma. Again, same issue, I have not healed and the pain is agonizing. I have now, after fighting it for over a year, gone to pain management. I am having a nerve block in a couple more weeks to help my foot but they aren't doing anything for my knee. 

I have started to think I was crazy so I asked my doctor to run a bunch of tests and have now been diagnosed with mixed connective tissue disease. My surgeon said this will cause me to heal 4-5 times slower than the normal person and it is the cause of all of the problems I have developed. I am waiting for a rheumatologist to set up an appointment. 

How are all of you dealing with the fatigue and pain? It is all I can do is to go to work and go home to bed. My poor husband has been so patient but I am so frustrated because I like to be busy and have been dealing with this foot issue for 2 years now. I'm tired of hurting all the time, I have now been put on anxiety meds and anti-depressants along with other meds. I am also frustrated with doctors thinking I just want pain meds. Two years ago I didn't take any medication. I have also been doing accupunture, massage therapy, physical therapy and floating. 

Any suggestions would be greatly appreciated, Thanks. 

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1 Reply

  • margaret22116
    margaret22116 GreenThumbz

    Posted

    Hi my situation is not nearly as bad but I have a connective tissue disorder and had huge pain in my feet. I have a plantar fibroma too but not one which needs to be removed. But I found hydroxychloroquine has helped the pain massively. I wonder if you may benefit from something like that. It is used in arthritis as well as other disorders. I am currently pain free I have been using this medication for 6 months and it worked very quickly. Sympathy for all you are going through.
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