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New pain doctor

Jan 12, 2016 4:46 PM

I saw my new doctor today. He said he thinks I have lupus, MS, and/or Lyme disease along with my CRPS. I go in for testing next week so I'll keep y'all updated. But I am worried and anxious for the results. It saddens me that Lyme is the only one I could have with a real treatment plan, or so it seems. Why did I have to get stuck with the incurable diseases?! I'm so tired of not living my life and only surviving the pain every day. I miss to go dancing and drinking with my friends without fainting or being sent to the ER for an unknown sickness. I really am not sure how to take this news, I'm astonished I haven't been tested for these when I've had the symptoms for over two years. I want this pain and suffering to end already. I'm not in a state with legal MMJ but it's the only medication that does anything whatsoever to me so... I'm going back to that now so I can get some relief. My doctor said that's my choice and he won't fault me for helping myself when no one else has been able to for three years. We are planning to have another SCS put in my C1-C4 to eliminate pain without drugs since my stimulator in my legs does help my nerve pain. I thank you all for your support and care I've received over the past two months I've had this app, it's truly helped so much.

Jan 12, 2016 4:56 PM

I'm sorry all this is happening to you right :/ but I'm glad your lucky enough to use mmj with your doctor knowing. I am lucky enough to have one like that as well. I hope the tests go well and you are able to handle anything else that comes your way. Gentle hugs to you

Jan 12, 2016 8:05 PM

Meganblondie, I'm sorry you were caught off guard about potential diagnoses. I know how that feels. I was dx with fibro in 2012 but kept telling my PCP something else was wrong. Last year 2 other docs dx sjogrens & hypothyroidism, all three autoimmune diseases. Like you said, it's very frustrating having incurable issues.

My brother asked me today how long I'd be on medicine before I could come off, when would I get well? Sadly I explained as best I could but I could tell he really didn't comprehend that I'd never be well or off meds. He has a learning disability from birth and sometimes it's like trying to explain to a child.

Give yourself time to absorb what your doc said, and any findings. Research and learn as much as you can, so you can ask questions at the next visit. You'll be in my prayers, and hopefully all it will be is Lymes. Hugs! 😷🙏🌼

Jan 12, 2016 9:53 PM

Megan Blondie hopefully it won't be as bad as you are afraid of. The Dr's don't know everything we will just bring it to the Lord. Keep you in my prayers and sending hugs.

Jan 13, 2016 12:44 AM

I went through the same exact issues and was told the same thing. If this was a pain doctor he is just guessing. You should see a rheumatologist that treats all of them. Dont get to worked up cause after I seen the specialist he explained that the Dr probably meant I had one of them they all share a lot of the same sythoms. I finally did a million test and did have lupus but still after ten years I run into a new Dr that doesn't after.... But trust yourself and pls see the specialist that can address all them issues cause pain management can't all they will do is treat the pain not the condition... Good luck and let me know if I can help you in anyway like I said I went through it myself...

Jan 14, 2016 7:02 AM

Megablondie, please try not to be too overwhelmed. I know when you get one diagnosis after another and there is no "cure" and you suffer through each day, just the thought of adding one more thing is enough to make you want to snap. I fully understand where you're at. Last visit the doctor said they thought I either had Lupus, MS, Lyme's. Well, my tests came back negative for all. Now they think because of my dry eyes and mouth that I have Sjogrens. I already have Fibro, hypothyroid, RSD/CRPS and a laundry list of other things. Now, after what I read about Sjogrens I'm scared myself. However, Flappsy explained to me what they did for her and the meds she's on for it and that it actually helps with the Fibro pain. So, there's a silver lining in there with the dark cloud. We just have to keep thinking positive. Hang in there, we're all here for you and we'll help you through. Sending you gentle {{Hugs}} and prayers that your tests go well and that if you have to have anything, it's Lyme's, which can be treated. 💕🙏🏻🌻

Jan 14, 2016 12:08 PM

Thank you so much everyone. I'm doing my best to practice mindfulness and keep myself calm as not to increase my pain levels. My migraines seemed to have been happening less since my second Botox treatment so at least I found treatment for something. I've been more tired lately though it's weird. Usually I sleep an hour a day but for the past week I'll sleep up to 5 hours a night! I know sleep is important in order to heal and decrease pain so that should be good. When I get a definite diagnosis I'll tell you guys.

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