Looking for support

Hello, I've just been diagnosed with CRPS. I was put on gabapentin, today is day 4, taking 600 mg per day starting today, gradual increase every 3 days. I have type 1, started with a large ulcer on my toe and cellulitis in my foot. Wasn't healing correctly and pain just kept getting worse. Saw about 20 doctors and specialists and did tons of tests. They thought it was vascular because my bone scan showed decreased blood flow in the foot. Vascular doctors said they couldn't find a reason for it and either way, nothing they can do. They finally decided it's CRPS. They think I have an auto-immune condition that has progressing over many years, causing various weird problems in my body. My left foot has constant intense pain plus regular sharp stabbing pains, horrible burning feeling in arch of foot. I cannot take any pressure on my foot, especially the toes. The foot does not heat itself so I must keep heat on it at all times or the pain is even worse. I got heated socks which help as long as I can stand them. However, they are thick and restrictive so I can't tolerate them for very long. I start physical therapy next week. I have read up on what will be involved but not entirely sure what to expect. U of M hospital wants me to see their specialists beyond just my local pain specialist and I'm not sure if that is necessary. My local doc says he can treat me as well as the docs at UofM. Also trying low level laser therapy for 2 weeks to see if that helps. So far, the pain has only gotten worse in the last few days. I started looking on this board for support because the pain is so bad, I wanted to know if it's normal. I've been off work for 3.5 months with this issue and hoping to undergo these treatments and go back within the next few weeks before my sick time runs out. I hope that's doable. Any thoughts would be appreciated.

7 Replies

oldestnewest
  • I also have started today experiencing pain in my hands. Feels a little better with gloves on, as if my hands are so cold they hurt. Still hurt some with gloves. Wondered if that was due to one of the treatments. I've experienced this a bit before, mostly at night but today it's been all day and very painful.

  • Have u looked into Raynauds and the surrounding CREST illness? If not, take a look. I've got Raynauds and systemic sclerosis and the pain issues, and cold extremities fit with your symptoms.

    Worth checking out.

    The only pain meds that work on me are oxycodone mixed with pregabalin (gabapentin's big brother). Also worth a shot thinking along these lines.

  • Ok, I will look into this. Thanks for the advice. I was thinking the hands sounded like Raynauds but I wasn't sure nor how it was treated. Sclerosis sounds bad. Are you able to work or anything?

  • Systemic sclerosis is also known as scleroderma, it is quite an aggressive illness at times and no, I'm no longer able to work.

    My pain however is under some semblance of control with the above meds.

    If you've not been checked for these illnesses I'd definitely suggest to your doctor that a rheumatologist's appointment might be needed.

  • I've been to a rheumatologist and they did all the blood tests. My ANA test was positive which some docs say indicates auto-immune, some say it's not enough when the rest were negative. I know tests can show negative but you can still have it, especially with many positive symptoms. A doctor that has worked with me over the last 15 years and knows my health very well, thinks I'm in the early stages of scleroderma. I also have hashimotos which she thinks is from the AI. I have lots of GI problems and have had chronic mono 3 times.

  • Hi dolphinluvr

    So sorry to read your suffering so much and hope the pain treatments your trying will help. Just wondering as you are ANA positive and symptomatic is the Rheumy seeing you again?. He should be keeping a watch as your health is obviously very changeable. It is correct to say that A positive ANA denotes something wrong with your immune system and there are a lot of immune conditions possibilities that it could be. I hope if needed you can request to see them again as these illnesses can change . Good luck.

  • Worth seeing a McTimony chiropractor. They could be helpful in reducing some of the stress. They will check and tackle things that the medics are incompetent at. Worth taking up yoga. You need to stretch out muscle to get the blood flowing again. Yoga will not the cure the problem, but should help towards reducing the over all pain.

    Hope this helps.

You may also like...