Hope - I have moved your post as I think it will get lost -
I am so new to this forum but reading your words I feel like I should reach out because I have had issues with family and especially with my husband understanding my pain.
I was only diagnosed with RSD two weeks ago, but it started six months ago ( I know that most of you have so much more pain and time with pain, but I am done apologizing for pain, so I claim my voice, even though I am fairly new to this... thank you for listening) .
I was mis-diagnosed over and over by podiatrists and e.r. doctors, x-rays, mri's, orthopoedists, etc. Everyone told me they didn't know what was wrong, or that it was "probably a" this or that. I was told fracture, tendon tear, bone bruise, ganglion cyst and other things, (a couple of these were true, but would have healed in a few weeks) but after four months, one dr told me about RSD and I just knew that was it.
I told my husband (who is wonderful and supportive, but has never had a broken bone) and he refused to accept it. I ended up feeling like I was going crazy for a little while, he would tell me that I was self-diagnosing while trying to research it, so I put off treatment and I really regret it. I would end up in a ball on the bathroom floor, not being able to breathe because the pain was choking me and having no one to talk to was the worst. I didn't want to bother them and I felt like I was losing my mind. Tried naproxen (made me shake and nautious), now on gabapentin and clonazapam (sp?), and seems to be maybe working, I don't know any more.
After I finally got an appointment with a neurologist, who diagnosed my RSD without an EMG because I kept a photographic journal of my foot ( initial injury was stepping on my foot with my other foot... good lord, if we could take back time) and the color/swelling changes, along with temperature changes,..... well, he didn't need an EMG. I am getting a 3-phase bone scan soon and starting nerve blocks...
My dad was with me for that and he has been tirelessly trying to find some answers...
My husband went into total denial. He berated me about being depressed and because I don't have all of the symptoms all of the time ( I can touch the affected area usually without pain, but all of the other symptoms are there) . He yelled at me because I was scared about becoming suicidal.... I think if I was not so tired and lost, I may have punched him. He is a good man, but it is so hard for someone outside to understand.
I know my journey is just beginning, and I don't have answers. I just wanted to tell you that you are not alone.
I have a nine year old daughter, and I am most sad that I may not be the mom I want to be.
My pain peaks at night (is this common?) and it has only spread from my big toe to my entire left foot so far. I am confused and to not have supportive people who believe or understand is the worst...
I feel for you and I hope your husband finds a way to understand and support you. I think that this is the most crippling part of this for me and I hope you find the support you deserve.
Don't give up hope. We can't give up hope.
I am going to a Calmare clinic on Monday to try this type of treatment.
Has anyone else tried this treatment?
Wanted to say welcome - and I'm sorry that you're another going through this. I developed CRPS/RSD after a knee injury and surgery 13 years ago, but was not diagnosed until I further injured my knee and needed another lot of surgery seven years ago. Since then it's spread to all four limbs, my back, internally...a bit of a mess.
One thing that is in your favour is that you've been diagnosed relatively early on. Most of the literature suggests that if CRPS is diagnosed and treated aggressively within the first 3-6 months of onset, the chances of remission are much higher. Nerve blocks are a good early step - and it's also imperative that you try to keep using your foot as normally as possible - physiotherapy is really, really important - but of course we have the hurdle of needing the pain to be managed so that we can do the physio without triggering unmanageable flares in pain.
Pain at night - this is something I find too - but I'm yet to work out if it's a true increase in pain levels, or if it's due to a decrease in other stimulations and distractions - which of course would make the pain worse.
Calmare - it's not a treatment we have available here in Australia, but I had a few chats with a doctor on a CRPS board we used to have going - unfortunately now closed - and he certainly seemed to have good success with it. Among people I know or have chatted with online there've been mixed results - ranging from near-total pain relief to absolutely nothing. I guess one good thing about
the Calmare is that it's relatively harmless - downside is that I believe it's quite costly?
All the best for Monday though - please let us know how you get on.
The link to the interview that Kristi mentioned is HERE
And Kristi - I'm glad to see you posting, but I'm sorry about
your isolation. It's something that I too can relate to. Happy Birthday to your son for the other day.
Moderator - Chronic Pain Forum
Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.
Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump