Newly diagnosed, need help
 

I had foot surgery in February 2012 to put in metal implants after a snowboarding accident. I had another surgery in December to remove some of the pins. Ever since the last surgery, my pain has gotten significantly worse. Constant burning, aching, and muscle cramps make me feel exhausted. I had painkillers left over from surgeries that I was taking 4x a week. Now I'm running out and the pain is getting worse.

I've been to 2 doctors to ask for help managing the pain and anxiety it's causing. They all said no to opioids or benzos because they were addictive. I finally got diagnosed with CRPS last week, and have topical cream to start. I hope it works soon, but I really don't know how I'll manage the next week or so without some kind of pain killer. I'm not a junkie trying to get high. All I want is 1 pain free hour, and I shouldn't be treated like an addict just because I can't take the pain.

The nights are worse. I have nightly panic attacks and shake now because I'm scared of the pain coming back. I'm in Washington state, with the strictest pain med laws in the country. Every time I ask for help I get looks of pity but no relief. Being in my 20s also brings me under suspicion even though I'm in serious pain. Does anyone know where I can go for help? I don't even know where to start right now.

Im so sorry for your pain. Im also newly diagnosed and i can only tell you what i am on. I take Amitriptyline at night. Its an anti depresant that is also used for nerve pain. Its really helped me and might be good for you to also help with sleep and anxiety. During the day i take over the counter Codene/Ibuprofen to take the edge off.
Also ive personally found Physio therapy a great help. At home i use warm epsom salt baths and heat packs.
People have also talked about going to pain clinics for their meds. They might have a better idea of how to treat you.
Hopefully someone on here is in your area and can point you to the best doctors in your area. This is much easier to approach once your pain is under some sort of control.
I really hope you get the relief you need. the people on this forum are fantstic and supportive of us newbies.
Good luck. also once you get pain relief try to keep your foot moving as much as it allows. Ive found its a "use it or loose it" kind of situation.:hug:

I'm not sure what type of doctors you are seeing, but a pain management doctor will probably be your best bet.

There are also different drugs that are used to treat the different types of pain. I'm on Cymbalta for the "nerve" burning pain. There are others in that group that are used. I do well on the Cymbalta and it helps with the depression that comes with Chronic pain. I'm also on 2 different muscle relaxers for spasms and cramping. Along with a "pain killer" and I also have a cream.

What area are you in? Someone may know a good doctor near you.

Sorry to hear of your pain and new diagnosis. You definitely need to see a pain management specialist who is very familiar with treating RSD/CRPS and understands the pain associated with it. They will know better on how to treat you - meds, etc. I personally see my family doctor and a pain management doctor. My family doctor manages all of my medications, unfortunately I have lots of allergies so I am limited to what I can take. I have read on these boards that many have had success with Cymbalta, Lyrica, Amitriptyline, Lidoderm Patches...these options would give you a place to start. Just do not ice the area, that would do more harm than good.

Wishing you the best...
Nanc
:hug:

So sorry you've got this horrible condition. It's bad enough without having docs who don't take it seriously and make you feel even worse than you need to....

Definitely IGNORE any doc who a) doesn't understand CRPS, and b) doesn't take the pain it causes seriously. There are many things associated with CRPS, pain and depression are the two major things that need addressing , and a good doc should refer you urgently to a pain specialist who has experience with CRPS, and a psychologist to help you with the feelings that come from constant pain and the associated life changes.

You are not a scammer, you deserve to get proper treatment that addresses your pain. Definitely ask for a nerve pain med, like amitriptyline, Gabapentin or pregabelin (Lyrica). I started on the ami and it helped within a few days. Nerve meds can really help the pain levels, surprisingly most traditional pain meds aren't that great at tacking CRPS pain. In the meantime, try getting some Epsom salts (unperfumed) from a chemist or online, wrap a few tablespoons in a damp tea towel, and place on the worst area for a while. Epsoms work on the calcium channels and block pain signals. They really are amazing, so get some ASAP and try - they aren't expensive. Use hot or cold water to damp the cloth depending on whether your ankle is feeling hot or cold at the time - ie if it feels cold, use hot water to damp the cloth.

Read and research all you can, as knowledge is power with this, mainly because so few medics seem to know the danged thing! You as the patient need to know what you want to try in terms of treatment. It seems harsh I know, I thought the docs would know what to do, but sadly there are plenty who don't know best, and you will have to push for good treatment.

In the meantime, keep a diary of your symptoms and pain levels, and take pictures of any physical signs like swelling, rashes, and skin mottling. Take your diary and pics with you to the doc, and keep believing in yourself. Your age should have nothing to do with how you are treated. Shame on any doc who makes you feel it is an issue...

Hang in there. This time when you're newly diagnosed and seeking treatment is the toughest, it WILL get better soon. Try to stay positive, and keep your foot moving small amounts regularly, as disuse makes CRPS worse.

Give yourself some treats and don't give up. :hug: You're not alone.

Bram.

Pain Management
 

Hi,
Sorry for the crps diagnosis.
Like the others said get to a pain mgt. doctor ASAP. Get neurontin (gabapentin) or Lyrica and again like the others said Cymbalta helps. I got to where I now only needed the Oxycodone for physical therapy, but my doctor switched that to Nucynta which is also narcotic but is more tolerable for me. It targets the "burning" CRPS pain better and I don't feel so "drugged" in my head (if that makes sense).
I hope you have some support it helps, but you must be your own advocate too! Don't give up, firmly yet politely assert that this is a serious condition.
Try not to use ice - it's bad for CRPS.
Youth and a quick diagnosis will be on your side to hopefully get this into remission.
Do everything Brambledog and the others said as well. Every CRPS patient is a little different but the advice here is usually right on target.
Hope you get relief soon!:hug:

Hi kb84
 

So sorry you are in such pain. I very well know of all the restrictions with pain meds. The younger you are the harder it is to get them too. I live in Florida, the crack down effected those of us who have legitimate pain issues, just like in your state. I am older, so maybe I didn't have as much trouble. Please look into seeing a doctor called a physiatrist. They are pain management doctors, and also deal with a person on a cellular level. I have had alot of relief with the protocal this particular type of doctor has given me. Maybe you can find a doctor in this field who has some compassion. I wish you all the best, go for the help and don't stop till someone responds to you. Living with acute pain can drive a person nuts. There is help if you look hard enough, and demand to be heard. I am in your corner. ginnie:hug:

Thank you so much everyone for all your advice. It's really nice to not feel so alone in dealing with this. I have an appointment with a pain management specialist on Wednesday, so hopefully that will help. Right now I'm on gabapentin, lexapro, and otc sleeping pills. Does amitryptiline help with sleep? If I don't have some sort of pain killer before bed I'm too anxious to fall asleep.