[Angelina55]

I am having a really rough time as some of you know. I have been dismissed by many doctors and have been told there is no hope and there is nothing else they can do for me. They have sent me on my way. So I am thinking I need to find a doctor. Right now the only doctor I have is my podiatrist who did my surgery on my left ankle. I live in a small town and have researched doctors who know about CRPS/RSD and have already seen them and have been told I no longer need to come back. Anyway my question is what kind of doctor do I look for? What would be the next best thing besides specializing in CRPS/RSD? I am just so lost and I think finding a doctor to help me would be the next necessary step like what most of you say. Especially since my doctor now is decreasing my pain meds because he thinks I will get "use" to the pain then be able to get rid of the meds all together. I have a feeling he is not right. The last few days have been true hell!! Thank you for your help. I hope everyone is doing great and having lots of pain free or at least pain less days!
Angelina

[tkayewade]

I would say a board certified pain management/anasthesiaologist. I seriously doubt I spelled that right. That is so mean. You will NOt get used to it. I didn't. It is not something you get used to and move on. I saw a pain management and got on some pain meds, did some unsuccessful blocks, and then I got my scs implanted. I had a lot of luck with it until a stupid seizure I had in April and then everything went nuts. I have a neurologist and a counselor also. A counselor can help a lot when a person is first diagnosed because I don't know about you but I went from depressed sad to really angry.

That would be my first step. My podiatrist set me up with a pain management dr and a physical therapist who was familiar with RSD because if they aren't they can make things worse. The counselor was just my opinion because mine has helped me immensely, especially with mine going systemic and all the other health issues popping up lately. Anyway, I hope this helps and things get better for you!

I totally identify with how you feel. I was a half marathon runner. Now I have to use a walker or a wheelchair. The hardest part is letting go of who you were and getting used to who you are now. Anyway, I hope this helps!

Message me if you need to talk!

TK

[Brambledog]

I couldn't put it any better than TK, exactly what I was going to say (but better put )

I'm lucky to have finally found a decent pain doc and physio, but I think very few of us get lucky with the first ones Sometimes you have to say 'that's just not good enough' and move on. But it's not easy, especially when you are short on energy.

Keep fighting for your right to good treatment, no doctor should just say they can't think of anything else and send you away - its so cruel. I wonder how your doc would cope if he broke his leg badly and was refused meds for the pain on the basis that he would 'get used to the pain...'? CRPS doesn't work like that - your pain needs to be under control for you to be able to keep moving. Any reduction needs to be discussed and to be agreed by you AND the doc. Shows how little he understands the condition, he just thinks you've been on pain meds for while, so he'll try and get you off them. He's not thinking of CRPS as a CHRONIC pain condition needing long-term pain relief. Grrr....

Anyway, really good luck. Hope you find someone soon.

Bram

[Angelina55]

Originally Posted by tkayewade

I would say a board certified pain management/anasthesiaologist. I seriously doubt I spelled that right. That is so mean. You will NOt get used to it. I didn't. It is not something you get used to and move on. I saw a pain management and got on some pain meds, did some unsuccessful blocks, and then I got my scs implanted. I had a lot of luck with it until a stupid seizure I had in April and then everything went nuts. I have a neurologist and a counselor also. A counselor can help a lot when a person is first diagnosed because I don't know about you but I went from depressed sad to really angry.

That would be my first step. My podiatrist set me up with a pain management dr and a physical therapist who was familiar with RSD because if they aren't they can make things worse. The counselor was just my opinion because mine has helped me immensely, especially with mine going systemic and all the other health issues popping up lately. Anyway, I hope this helps and things get better for you!

I totally identify with how you feel. I was a half marathon runner. Now I have to use a walker or a wheelchair. The hardest part is letting go of who you were and getting used to who you are now. Anyway, I hope this helps!

Message me if you need to talk!

TK

I was seeing a counselor but now my daughter is out of school and since I am a single mom I have no one to watch her. I don't know how I can go to a counselor when I have my daughter full time. I tried going to the only pain management in town and in the nearest big town and they both told me I had no other options and they wanted the podiatrist to handle my pain meds. Which I think is really weird by the way. What kind of pain management doctor won't help me with pain meds? I just feel like I am being abandoned.

[Angelina55]

Originally Posted by Brambledog

I couldn't put it any better than TK, exactly what I was going to say (but better put )

I'm lucky to have finally found a decent pain doc and physio, but I think very few of us get lucky with the first ones Sometimes you have to say 'that's just not good enough' and move on. But it's not easy, especially when you are short on energy.

Keep fighting for your right to good treatment, no doctor should just say they can't think of anything else and send you away - its so cruel. I wonder how your doc would cope if he broke his leg badly and was refused meds for the pain on the basis that he would 'get used to the pain...'? CRPS doesn't work like that - your pain needs to be under control for you to be able to keep moving. Any reduction needs to be discussed and to be agreed by you AND the doc. Shows how little he understands the condition, he just thinks you've been on pain meds for while, so he'll try and get you off them. He's not thinking of CRPS as a CHRONIC pain condition needing long-term pain relief. Grrr....

Anyway, really good luck. Hope you find someone soon.

Bram

It is hard to keep fighting and I feel guilty about it because I have only been fighting for about a year. But I am just loosing my fight. I am trying to stay positive for I truly believe that is the best way to fight this thing and to keep my head above water, so to speak. Its just fighting by myself with little to no support and hearing over and over by doctors that I have no hope and being sent away is.....hurtful and hard to handle. I am going to have to call my doctor and talk to him about my pain again. At least he is sticking with me even if he is not really thinking straight right now.

[fbodgrl]

I would look for a pain management or physical medicine doctor. My doctor is both, but he s not an anesthesiologist.

My Rheumatologst is also familiar with RSD.

Here you can call the hospital referral line and ask for whatever speciality and the referral line will give you the name, number, etc. for the specialists in the area.

[zookester]

Hi Angelina,

My heart goes out to you! Have you tried getting a referral to Northwest Pain Care Inc. in Spokane? I don't honestly know how familiar they are with CRPS/RSD but it might be worthwhile for you to ask your Podiatrist for a referral?

Have you tried aqua therapy at all? I don't mean with a therapist but just going to a pool and walking etc.,? This might be something you can do with your daughter as well so no need to worry about child care.. just a thought.

Another thought is that maybe you could reach out to a local church for counseling? For me, the ladies at our local church have been a true blessing!

Have you tried lidoderm patches or any of the medicated compounded creams?

I'm just on the other side of the pass from you.. if you need a friend I'm here

Wishing you the best day possible,
Tessa

[tkayewade]

Wow, that is strange.where I am, if you get more than 2 or 3 prescriptions of pain meds, they are pawning you off on pain management. Originally my podiatrist thought I was a drug seeker until he saw the rsd results. Then he felt like a jerk. I think every state and country is different. I've heard some states are much tighter in their pain laws. I hope you get it sorted out. Did I read you would be getting an scs trial possibly? If so, that helped me immensely until I had a seizure. I understand the child care situation. Luckily, mine are getting old enough to be home alone. If I were close, I would keep your child! that's one thing I miss: teaching. If I get all this back under control, hopefully I can teach again. I have an M.Ed. Anyway, rsd is frustrating disease and I think everyone gets discouraged. I know I have been lately. It's definitely misunderstood. If I read correctly, I saw northwest, and I have read many times Washington is notoriously difficult on chronic pain patients. I wish you luck, and I wish I could help. If you need to talk or vent, I'll listen. Hope things get better. The pool is an excellent suggestion. I love warm pools. If they're cold, I wind up shaking like a leaf. I have no temp control. I look silly.

TK

[gabrielyse]

They seem to be a bit of an anomaly, but see if you can find a pain management doctor who is a neurologist. Right now my partner gets her scripts from her GP and sees a neurologist regularly bc all the anesthesiologist pain management doctors refused her as a patient bc she was unwilling to do more nerve blocks (that made it worse) and refused to lower her medications. it's a very long process and full of trial and error. just don't give up or settle!! we're going through the process now two years after moving across the country and still trying to settle things. If you need someone to talk to or questions about paperwork or doctors etc please message me, i'm more than willing to try and help

[Angelina55]

Originally Posted by zookester

Hi Angelina,

My heart goes out to you! Have you tried getting a referral to Northwest Pain Care Inc. in Spokane? I don't honestly know how familiar they are with CRPS/RSD but it might be worthwhile for you to ask your Podiatrist for a referral?

Have you tried aqua therapy at all? I don't mean with a therapist but just going to a pool and walking etc.,? This might be something you can do with your daughter as well so no need to worry about child care.. just a thought.

Another thought is that maybe you could reach out to a local church for counseling? For me, the ladies at our local church have been a true blessing!

Have you tried lidoderm patches or any of the medicated compounded creams?

I'm just on the other side of the pass from you.. if you need a friend I'm here

Wishing you the best day possible,
Tessa

Northwest Pain Care is the doctor who told me I have no hope and there is nothing else I can do. He sent me on my way and pretty much told me not to come back. He said there is no reason for him to see me again. I would love to get a membership somewhere with a pool but I don't have the money, but in the summer I have access to a pool and I go swimming a lot. Or just walk in the water etc.. I have Lidoderm patches but I can't figure out where to put them since it is my entire left leg that is in pain. I have tried on my ankle where the pain is worse but it doesn't really help and taking them off is unbearable. I can always use a friend!