what to do...
 

Hey everyone...
I find myself here because I can't seem to figure out what to do, where to go or how to "fix" this. 6 months ago I had double axillary excision where both of my armpits were cut out basucally due to hidradenitis suppurativa. Do yourself a favor and do not google it. My case was NOT what you see if you do. Rather, I had reocurring golfball size cysts that became debilitating. So I had the surgery and immediately upon coming to I knew something was up with my left arm. Excrutiating pain and numbness. My right arm healed perfectly. Fast forward to now and I am so miserable. After about a month of prescribing oxycodone, my surgeon said he was done with me and there was nothing more he could do. I then started seeing my GP who prescribed 1 5 mg hydrocodone every 6 hours and sent me on way. Well guess what... I had to take 2, sometimes 3 to get any pain relief. I tried neurontin and threw up. My Dr made me feel so low... he basically scolded me like a child for taking 2 pills instead of 1 (i am 31 yrs old and have never even held a cigarette and dont drink). He sent me to a physiatrist who sent me to physical therapy. After a month of crying at PT I decided it wasnt worth the pain. Currently i am waiting to see if a pain management center will take my referral (one place rejected me). My dr actually told me he used to be an ER dr amd people faked injuries for pain meds. Really?! Do you see this gigantic scar?! : / I am so upset and feel like doctors think I am a drug seeking lunatic. It doesn't feel fair. How do i proceed? What do I do?
Sincerely...

I thought times had changed.I got RSD and after NUMEROUS DR.s saying it was all in my head. I finally got diagnosed around 9months later but by then my arm was in a cast and when they took it off I screamed bloody murder! My neurologist who I have had for approx. 17yrs. and after my first of 4 nerve conduction tests . He finally said what it was. Now not only in my right arm after my 2 back fusion it spread. I was one who never took Tylenol but now I am on multiple meds. I am now dealing with a flare-up. To make a long story short. (We) all know what you are going through! Stay on this line because support & finding the right Dr That will listen! I will say a prayer for you! LISAR624

Definitely be your own Advocate!!!!
 

Try and see a Neurologist/Pain Management doctor. They are generally more experienced with Crps and other nerve pain disorders! Document !!everything!!! you can and find a doctor as soon as you can. If you're having visable symptoms such as skin color changes such as red/blue/patches of either, swelling, bulging veins take pictures. Start a daily pain journal, you can get templates online, and record your symptoms and pain types and levels. It's very useful for not only your doctors, but can help you see what might aggravate your pain. In turn you can learn how to avoid things that you might not realize are causing heightened symptoms!
Try to find a doctor who has experience with Crps or severe Neuropathy conditions. They will be more likely to help you than others. Crps is rare, and scary, but there's quite a few other conditions that have really similar symptoms. If it ends up being Crps, definitely absolutely be proactive in your care! It isn't always a life long ordeal! It's only a rare 7% of patients that end up having severe, permanent Crps. Remission is attainable especially early, within the first 3-6 months and the first year. If at all possible, if you're diagnosed with it, seriously try and find a Crps Specialist in your area!! It's so important to have someone who knows how to treat Crps. But with the correct treatment plan it's absolutely possible to beat crps into remission. Every person with Crps needs a treatment plan specifically designed for them, what worked for one person usually doesn't work for another in the exact same way.
I'm sorry you're having such a hard time right now. And I hope you can find some way of relief soon. As much as you can, seriously, try to stay calm and destress as much as possible. I truly understand how hard that is, but emotional, mental stress can really exacerbate a lot of Neuropathic Pain syndromes/conditions.
No matter what your diagnosis is try to stay determined to get better, to stay strong, and to live life. I know how hard that sounds now. I really do.
When I was injured and was looking for help, I didn't even have insurance. It was so hard trying to find help for my pain, and even knowing what was wrong. I was so exhausted, and in tears half the time, and frustrated that the low income clinic I was forced to go to. Nothing they were giving me helped. I did advocate for myself though, I filed a claim with the hospital I was injured at, and had started sending my bills to them. I searched online and found a Pain Management doctor with great patient reviews, and whow was willing to wait for payment After the appointment. Within 2 weeks I was diagnosed with Crps.
It's really important to get a diagnosis as soon as you can, IF it's crps.
I sincerely pray that it won't be Crps. Just be sure to find someone who has experience and knows how to treat nerve pain correctly! Neuropathic pain is one of the hardest pains to get under control, so having the right doctor is paramount to relief/recovery.
Hang in there Hope!! Seriously try and destress as much as you can with pain, and be you're own advocate! We're here whenever you need!