I'm very grateful that my PM doctor is familiar with CRPS and we've been working together towards a way to keep this tolerable in me. I'm so grateful he's knowlegable and understanding of my condition as well as doesnt immediately leap towards the narcotics for this condition as they hardly worked on me. But my present treatment of medication and sympathetic nerve blocks has been working wonders for me. And for the first time in years my toes are warm and pink rather than cold and blueish purple. The sensitivity to touch is a little more difficult but its being managed by medication as well as desensitivity exercises (I've moved from a soft fur toy to cotton cloth... socks are becoming tolerable to put on now)
It is a terrible condition to befall anyone and I would not wish this on my worst enemy. But with a caring PM doctor who is knowlegable in CRPS, it CAN be managed and it CAN be supported. But yes I agree more doctors and PCPs should learn more about CRPS. I was grateful my 3rd orthapedist referred me to my PM doctor when she recognized my symptoms of being ultra sensitive to anyone touching my foot and the cold toes despite being in wool shoes.
I'm very thankful and grateful for the doctors involved in my care for this condition and I hope that more people with CRPS will be looked after properly because this is something that can be treated, perhaps not cured, but at least make life bearable. I'm able to walk without a cane as a 36 year old woman for the first time in several years. I can now walk to my mailbox when I couldnt do this before.View Thread
Yes I have gone through the painful judgements. I know I've gone to the walmart and have wanted to use one of the scooters, but have not because of fear of judgement. And then having to sit down every 2 minutes because of the inferno in my foot as well as this stabbing pain that makes me want to cry makes me question why do I worry about what other people think, its MY health. After that I stopped worrying about getting that handicapped placard. I've stopped worrying about using that scooter in walmart. I've stopped worrying about what people may think or if people would pity me if I use my cane. Its MY health I should be worrying about, not everyone else's opinion.View Thread
For me, my husband and I have gone up and down the roller coaster when it comes to dealing with my recently diagnosed RDS. At first when the doctors didnt know what to do, they kept filling me full of opiods. I was called a junkie. But now that I'm beginning the treatment of the symptoms of RDS, my husband is much more sympathetic. I realize that I cannot do as much now as I wanted to. I realize that I've gained weight because I cannot walk and dance like I used to. But he is understanding that I have limitations and he makes sure I take my Gralise now when I'm supposed to. He makes sure I eat and gives me my fur pillow to put my foot on when I'm clawing the ceiling in pain. I know he makes great sacrifices for me including taking me for my doctor visits and keeping the health insurance for us both. My family is also very supportive of me and my mom is always there with a sympathetic ear when I'm clawing my eyes out in pain and just destressing really helps with her. I've developed many online friends now due to my condition and they're all very sympathetic. It just feels good to not be alone. Many of them express to me that they couldnt imagine what this kind of pain could be like and offer sympathy, but I do encourage them to not treat me any differently than someone else. Though they do help me set my own personal limits for myself so I dont overdo things. Its amazing how many lives we touch.View Thread
Your story sounds so familiar to me. And you definitely have my sympathy for what it is you're going through. If you get blown off by your doctor, its your right and responsibility to look elsewhere for a compassionate doctor.
I know I was in this situation in the past 3 years. Chronic pain with no hope in sight with only a few narcotics tossed at me to send me away.
Dont let anyone tell you that you're not in pain. Your pain is VERY real and it is your body telling you something is wrong. Dont ever accept the brush off. You're worth so much more than that.
Demand to see another doctor, or you could visit a back/spine specialist to give you the necessary tests to at least give you a diagnosis that is always the first step towards recovery. Once you know what you're dealing with, then this information can be used to get you at least feeling human again.
Best of wishes and good thoughts headed your way during your struggleView Thread
Meditation and visualization really do help me. Stress for me is a common trigger of higher pain levels for me so keeping myself calm on a daily basis obviously is challenging. But meditation really does help.
Exercise, if it is an on my feet exercise, I cannot do it without aggrivating things. The more time I spend on my feet, I'll be paying for it and not in the good way
Having a support network always helps. Feeling like you're not alone, like you're not going crazy from the pain, that people are there who understand you. Be that family, friends, or an internet support site like WebMD. It definitely makes you feel less alone with your pain.
Distractions also help. Be those distractions reading, cooking, or other activities you enjoy. Again I think that stress reduction is so very important to treating chronic pain.View Thread
Dilaudid 2mg taken orally from what I've read so far is not as effective as oxycodone because of the way hydromorphone interacts with the stomach and intestinal linings. From what I've read so far, Dilaudid 2mg orally is perhaps 20% of the effectiveness of the same dilauded taken IV which is MUCH stronger then hydrocodone then.
I'm still working through the proper medications and lifestyle changes necessary to treat my pain (CRPS). Dilaudid does very little for my pain. Its been wrecking havoc though on my memory. I am loathe to even take it except in the most extreme cases (those 10 moments), because of the memory loss I encounter while taking it.
Also remember each pain medication affects each patient differently. For one person oxycontin might be a lifesaver, for others it will do very little.
I understand where you're coming from with people demanding oxycontin for fractures and such. The stigma that those of us living with real pain every day for years must suffer is causing us all more harm than it is doing us good.View Thread
You certainly have my sympathy Tara. I've recently been diagnosed with CRPS after so many doctors looking at me like I've got two heads when I scream from them touching my ankle. One even accused me of drug seeking when he could see my swollen foot, and other VERY classic CRPS symptoms I know about now. He even had the nuclear test proving it as well and told me I was making it all up.
What I can suggest is to be honest with your pain management doctor or your regular doctor, whichever you see to treat your pain. Show them a pain diary if possible to chart when/how you're taking your present medications, the time of day that your pain happens, as well as your activities at the time of the pain. By going properly prepared to any doctor, they will recognize the suffering that you're going through and adjust your medication accordingly, or work with you to find a solution for your pain.
I just realized you posted this a while back, but hopefully your doctor visit went well.View Thread
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