Not to be excessively whiny but...
 

I really cannot continue like this much longer. This doc sends me to that doc. One doc says this, another doc says that. Insurance covers about nothing...which I guess makes sense since not one of the seven docs who have run 20 tests and made me endure more PT that has only made things worse are doing spit about my continually declining function and increasing pain.
I don't know what to do anymore except give up.

You can do this! You already are, it is just a rough day, which as we know come more frequently than we'd like.

Listen to your own wisdom as far as what your doctors say. It is your body, you are intelligent and educated. You know better than anyone your deficits and symptoms. All you can do is take their opinion and information and determine for yourself how applicable it is. They may very well have many different opinions. I have had some jump right out with a CRPS diagnosis and others who scratched their heads. When I had my neuroma, I was the one who figured it out from symptoms and clinical data. It baffled everyone until I got to the peripheral nerve guys. Then I got some answers, it took nine months for me to get to the right specialist. Self-referred of course...

I really feel strongly about the plastic surgery, peripheral nerve specialists taking care of nerves. They are the only ones who can reliably tell you if anything can be done about your nerve injury. I am not surprised you've been shuffled around. Humpteen doctors didn't figure my injury out, then plastics came along, said "yes, we understand", went in and repaired it. I dont mind helping look into docs somewhere near you who might be able to give more concrete info. Send me a PM.

On insurance. If bills are piling up call the doctors billing people and tell them your situation. They have a process for writing off co-pays and bad debt. I have seen many patients who called to get co-pays reduced get relief.

Hang in there! Breathe deep. Grand babies are coming soon. I just know you're gonna get through this.

Sending Healing Love, :hug:

hi always believe. please don't give up. i know how frustrating it can not only dealing with rsd but with drs that have different opinions on rsd and how to treat it. but giving up isn't the answer. you just need to learn as much as you can about rsd and its treatments and then look up a dr nearest you who knows how to treat rsd and then he can help you get the treatments you need to help manage your pain. just take it a day at a time and keep the faith. things will get better. you are not alone. soft hugs.

hi again always. hope you have a better nite tonite and can get some sleep. i'm sending comforting vibes your way. take care.

Thank you. This has been a physically and emotionally exhausting past 10 days. In addition to all the doctor biznotch (neuro/emg/3 phase scan/endocrinology/blood tests/PM), pain up and down with some major swelling and multiple times being unable to stand, getting ready for a visit from my son, d-i-l & grands, finishing up major home repairs, we have also had some horrible weather. Today a tornado touched down within blocks of my house.

I was feeling like there was something to grab onto until my PM appointment. I think the most discouraging aspect is that he wants to do a few LSB's and then a SCS. Insurance denied the LSB and yet no alternative was offered. Scratch that...cymbalta. I know this will come out as totally vain but my 5'1" body cannot handle any more than the 50 lbs these stupid meds that haven't done squat have already put on. I also cannot financially afford to buy any more clothes! So I am concerned about the cymbalta. I am also frustrated that no one seems to think about the breakthrough pain even IF the cymbalta does anything.

Dang...there I go again. I started a blog about self-advocating, hoping I will get a handle on that myself. I also have begun compiling some exercises that those unable to weight bear can do as well as lowered calorie meal plans.

I appreciate you all so much! It means so much to be able to share & know I am not alone.
:grouphug:

Hi Always,
There's an old Native saying that might be helpful to remember. "Pain is natures way of telling you're alive".
Maybe it'll help. Maybe not...
It helps me to cope sometimes...

hi always. i hope you're having a better day today and enjoying your visit with your son. i just wanted to let you know that my pm dr prescribes neurontin (gabapentin) and a pain killer to manage my rsd pain and my psychiatrist prescribes an antidepressant called zoloft and antianxiety med to help manage my stress due to rsd. i was given cymbalta for about a month instead of zoloft but it didn't help me. i found that zoloft helped more. but everyone is different. you may want to talk to your dr or find one to talk to about maybe prescribing neurontin (gabapentin) along with a pain med to manage your rsd pain. maybe cymbalta will be enough for you, but i found that it wasn't for me. but everyone is different and i hope it helps you. but if it doesn't i just wanted you to know of other options that you might want to discuss with your pm dr. as far as a scs everyone is different with that too. i personally felt that it was too invasive for me and my neurologist concurred so i decided not to go that route. but some people have found that it helps. you may want to get several drs opinions on this before making a decision about it. and some drs are very helpful in setting up payment plans and working with you to help you get the medical treatmenst you need. just make sure you are covered before trying anything because some treatments like the scs are very expensive. whatever you decide i hope you feel better soon. there are good drs out there that can help you so don't ever give up hope. sending soft hugs your way.

Thank you! My son & the grands aren't coming until the end of August but I am still in the moving in phase...lol

I've actually been on gaba...twice. It did absolutely nothing for me except add a total of 50 lbs. New PM prescribed lyrica (not covered & $350, so no lyrica for me). His solution is cymbalta but I am very leery of that as well.

I really appreciate your thoughts.

cymbalta is use to help treat pain and depression and though it didn't work for me that doesn't mean it won't work for you. everyone reacts differently to things so if your dr thinks it might help it may be worth a try. but that has to be your decision along with your drs. also, i were you i would try checking with your dr to see if there is a way to get help so that you can get the meds you need at an affordable price. if they confirm your diagnosis maybe they can help you with a payment plan. it can't hurt to ask him. hope you feel better soon. take care.

Hi Always,

I get where you are coming from with the meds-induced weight gain. I piled on over 60lbs in under 3 years partly because of Mirtazapine and Metoclopramide.

It has led to so many accelerated issues, including pushing my blood glucose numbers over into full blown Diabetes. The last straw was a routine collapse 10 weeks ago which was so bad I broke ribs due to my weight landing on my arm. I am now fighting back, and succeeding, with a simple calorie controlled diet.

I hope you find a way to battle your demon too, I know how difficult it is.

Dave.

Hi there! It sounds like you are stressed to the max! I moved a few months back and remember feeling very overwhelmed and frustrated because i couldnt do much by myself. Thank goodness i had family members to unpack. I still have lots to do but at least the house is tolerable (plz dont peek in my garage or basement haha) As for cymbalta, i've been on it 2 yrs now. I havent gained weight from it. It helps my anxiety and depression but not nerve pains. I stillget zingers down into my feet and searing pain in my legs when i lay down. I cant take lyrica, neurontin, gabapentin. I remember they caused weight gain, bloating, n yes, hair loss. So im on the do nothing path right now until ican afford to get into a pain mgt dr to see what's new. But just to let you know cymbalta helped my psyche but really not my rsd pains.

Thank you! I am having a bit of trouble with PM. He 'knows CRPS' and says I don't have it because I can wear a sock. He says he "has seen CRPS and you don't have it" but he has never seen my leg, felt the temperature difference or assessed the edema. He said I need to do something to get my mind off the pain. Really? I won't do a pain diary because it makes me focus too much on the pain. And I was in a PM office...did he want me to talk about the weather?

I was taking so much ibuprofen that I now have GERD because that is the only thing I have for pain. I get that neurontin/lyrica et al is supposed to help but when it doesn't, what's next? Invasive procedures. I'm just so frustrated.

Oh...I actually moved into this house Sept. 2014. Still have boxes everywhere and furniture in the basement/rooms they don't belong in...lol. I did have to rip out & install new flooring and paint everywhere, so I'm going to use that as my excuse! :winky:

Ibuprofen can really eat your gut. I can take the liqui-gels but not the regular tablets. Having that pill sit in your stomach may contribute. Love the 'get your mind off the pain" comment. OMG. Hard to do if you are writing about your pain all day. I am with you on not keeping a pain diary. Maybe log something on a calendar if you had a sentinel event but other than that...microfocusing on it makes it bigger.

On having CRPS or not...I heard the shoe comment too then saw another PM who said "you have CRPS'. I wouldn't worry too much about it. You know for sure you have a nerve injury. Can you have temp and color difference and intractable pain without CRPS just from that? Absolutely! Can you have CRPS somewhere on the spectrum just from that? Absolutely! Only God knows for sure what's going on in there...


:grouphug:

rsd's symptoms can vary as time goes on. it can hurt to the touch at first and then start hurting more internally in its later stages. meds also numb the pain of touch so the sock theory your dr has at least to me is not correct. some drs think that if you don't have physical symtoms that can be seen all of the time with rsd then it is not rsd or it has gone into remission. that is not always the case and a common misconception i hope that all drs will someday realize. all we can do is learn as much as we can about rsd and try to raise awareness to others. if i were you i would try to find another pm dr and neurologist for a second opinion. as for treatments there are many others along with meds. scs is not the only other solution unless you want to try it. but by learning more about rsd through research and others experiences on this forum you will find things like calmare, ketamine, hbot, nerveblocks and pain pumps. also hypnosis and pain coping drs. and accupuncture that some have found worked for them but did not for me. and there are other meds you can try if your dr okays them. just keep learning and searching for a dr who can help manage your pain better. i know its hard when you're feeling so much pain, but you will be surprised how much strength you have when you really need it. you can do it! just remember to never ever give up. you are not alone. soft hugs.

Exactly! That's why I'm so irritated with this PM. And yet, it took so long to get a referral so I am playing the game for now.

Ultimately I will probably end up as self-pay somewhere. I hate sounding like a drug seeker...I just want something to help the pain. I appreciate the attempts at narcotic alternatives but the increased pain is reducing my function at this point.

My neuro is actually addressing the issue much better than PM. With medicaid, it's a bit difficult to find providers, so I am pretty well stuck right now with the PM.

I know there are a lot of other treatments, my PM is not discussing those. He wants to do a LSB, repeat it if it's effective and then go on to SCS. I tried acupuncture for my endometriosis - not effective. I appreciate the "pain coping/pain psychologists" aspect but I am in real pain...not something I can think away or change my mindset to eliminate it. I continually do physically what I can. In my mind, I am 100%...my body tells me I'm not, not the other way around. While I agree that coming to an emotional place of acceptance/activity modification will help me on an emotional level, it isn't going to reduce the edema, the color changes, the temperature difference or the pain.

I have almost fallen 3 times already today due to my knee 'buckling/giving out' followed by sharp, shooting pain through my knee/down my leg, then razors in my foot. Thank God for the grab bar & fold down shower seat!

QUOTE=Always_Believe;1156256]My neuro is actually addressing the issue much better than PM. With medicaid, it's a bit difficult to find providers, so I am pretty well stuck right now with the PM.

I know there are a lot of other treatments, my PM is not discussing those. He wants to do a LSB, repeat it if it's effective and then go on to SCS. I tried acupuncture for my endometriosis - not effective. I appreciate the "pain coping/pain psychologists" aspect but I am in real pain...not something I can think away or change my mindset to eliminate it. I continually do physically what I can. In my mind, I am 100%...my body tells me I'm not, not the other way around. While I agree that coming to an emotional place of acceptance/activity modification will help me on an emotional level, it isn't going to reduce the edema, the color changes, the temperature difference or the pain.

I have almost fallen 3 times already today due to my knee 'buckling/giving out' followed by sharp, shooting pain through my knee/down my leg, then razors in my foot. Thank God for the grab bar & fold down shower seat![/QUOTE]



I wouldn't consider SCS or anything else invasive until you get peripheral nerve consult. You don't have all the options yet and may have something treatable. I sent you a PM....

I will absolutely NOT do anything more than perhaps a visit to CO...lol

I did see your PM (:Thanx:). Getting ready for VR meeting...for all the good it is doing without a letter from my PCP that says I can work :Scratch-Head: