Not being able to attend family gatherings
 

I am so fed up with having to leave family functions and special events early or not being able to go because of this disease! I feel like I am being punished or something and I don't know why. I don't understand. I miss out on so much so many outings with my daughter where someone else has to take her because I can't and I just can't take it anymore. My doctor just lowered my pain medicine and I have been in so much pain the last few days sometimes I feel like I might pass out. I am scared that he won't change it back. I have been told there is no more hope for me and there is nothing more anyone can do for me. And now I think it is spreading to my right leg too. I don't know how I am going to get through this. I don't want the rest of my life to be like this. I can't do this. I live in a small town and don't even know how to find another doctor or if I even should. I wish I had family or anyone really who was there for me to tell me it is going to be ok and to support me.

Unfortunately, I believe missing SOME outings is just something we have to get used to. I have a tough time getting some friends and family to understand that it's not just THAT day. To go out on a Friday, I have to make sure that I really take it easy Wednesday and Thursday for there to be any hope of getting showered and dressed for a Friday outing. If I do that and take extra meds, I can usually plan that Friday outing. It does sound like my doc is more generous with the needed meds for me than what you are dealing with. I've still missed outings when I've planned well, but then my ride falls through. If I have to drive, I can't use my pain meds. I have a very difficult time getting dressed without meds....and many days just CAN'T do it. It stinks missing out on fun times with family and friends. I feel like if I could just wave my magic wand and "appear" at the outing, at least I'd feel a little better with the distraction from pain that socializing can bring. My magic wand would also have to have me be bathed and dressed, because it would be too depressing to enjoy the event if I was there with my greasy hair in a bun, wearing my smelly nightgown. :eek: I'd frighten people away.

It stinks to lose out on fun occasions. It's ANOTHER loss that comes with our condition.

I get the feeling from your post, though, that you are missing out on even more events then would be necessary if you had adequate pain control. That REALLY stinks.....and shouldn't be happening. I spent many years in a similar situation. It makes you feel even worse...as if RSD weren't crappy enough ! It might be difficult finding the right doctor, someone who "gets" it, by those docs are out there. It took years for me.......constantly made to feel worse by the "it's not RSD, it's all in your head" and "I hope that you don't think you are getting any narcotics from me" comments and attitudes of several so called health professionals. It's a VERY frustrating journey. I'm relieved to be in a decent, though not perfect, place now. I hope that you'll be able to get here too.

You need to get in touch with your doctor to see what the heck he is thinking ASAP. RSD pain doesn't decrease just because he might be uncomfortable prescribing pain meds long term. I'd tell him it's HIS job to find the right med mix OR refer you to a doctor who knows more about RSD and is comfortable helping you manage your pain. Your doc might be done doing testing and unknowledgeable about newer treatments like ketamine, etc......that doesn't mean he gets to let you go inadequately treated.

I have this fantasy life that someday I'll feel good enough to be able to work again, at least part time, so I could work as a patient advocate and go to appts with people suffering from inadequately treated pain and be clear to the doc exactly what the patient's homelife and suffering is like and demand a better pain management plan. I'm not usually a passive push over, but I've felt run over and greatly misunderstood on soooo many doctor visits. Being in pain and dreaming of my bed instead of being stuck in the doctor's office became my focus. It was so hard to explain myself and stick up for myself. I dreamed of having an assertive advocate to stand up for me.

It is difficult to find the right doctor and the right doctor patient relationship. I think you should try to discuss this with your current doc and see how much he is willing to work with you.....and for you. After that discussion, you'll have a clearer idea of if you need to change docs. If it comes to that, try to be clear with this doc that it is his job to help you find a doc who can help you manage your pain if he can't.

Good luck. I'm sorry that you are dealing with this. :hug:

I so hope this crappy patch of life is done with you very soon, and you can turn a corner and feel a bit better.

Fins is right about social stuff being a bit if a trial and error situation, as I'm sure you know, but it always sucks when someone else takes your child to do something you wish you could. And I really think you should try to find another doc, his attitude with your SCS trial was off as well, and he is not coming across as he kind of supportive, understanding and knowledgeable doc you need to get through this.

Don't give up. There is a law about every patient having the right to adequate pain relief for their condition - you have to believe it, and challenge your doctor's method of 'caring' for you by cutting your pain meds. It really does stink, and he is not doing his job well. You deserve better.

As far as getting some help and advice, try calling a local medical support network or charity - even if they can't help they will be able to point you in the right direction.

Hang in there. This too will pass :hug:

Bram.

The problem I have is my doctor is my foot doctor who did the surgery on my ankle. He is giving me my pain meds because no one else will help me. He kinda understands but he thinks that if we lower the dose then I will get "use" to the pain then we can lower it again and eventually get off of them. But the pain is just getting worst. I can't do anything.

Dr. Hatheway (the doc who did the SCS) doesn't want to see me again. So I don't have to worry about him. I only have my surgeon. Who did my surgery on my left ankle originally that started the CRPS that is helping me. My family doctor doesn't even really help, but I think I will go see him again to see what he says. I live in a small town and can't find anyone that knows about CRPS/RSD that I haven't already been to and have dismissed me. So I don't know what kind of other doctor to go to.

I'm so sorry to hear all that!!! But I agree with the others - you just have to find a doctor that knows what this is and how to treat it (like you have the energy to do this :( that's so awful). What are your transportation options? How close is the nearest larger town?

I can still drive (most of the time) but the nearest big town is in the next state which isn't that far but I have Medicaid and other states don't accept it. So I have a hard time paying for it.

Angelina,
 

While I do not have CRPS, I deal with lumbar spine pain, fusion, nerve damage and Periphreal Neuropathy (PN) legs, ankles and feet. Pain is 24/7. I was fortunate to go to a facility dealing with Pain Management. My doctor is well aware of all these issues that cause debilitating pain. Without the pain meds he has prescribed; I don't know how I woud get thru each day.

I do feel you are in need of a doctor that deals specifically with Pain Management. While they do not work specifically with these diseases, they know and understand how to treat the pain that they cause. I do not like taking the narcotics; but it is not the same as being addicted because there are no highs. While not "addicted"; I am dependent on these meds to treat the pain. I am still limited with the functions I can attend or how long I can stay; but without these meds; would be able to do even less.


Gerry

Oh, I see - how about the nearest big town in your state? Is it even feasible for you to get to?

Hi Angelina,

What about the UW? Dr. Gofeld (Dr. Gofeld is a UW assistant professor in the Department of Anesthesiology and Pain Medicine) is familiar with CRPS and since the UW is a teaching hospital I am almost certain they take medicaid or offer lower pricing based on ability to pay. I know it would be a 4-5hr drive but, it might be worth your time if he can get you on the right track with pain management etc., He doesn't have the most charming personality but, he is one of the very best nerve docs in WA state.

What are you currently taking and are you finding anything outside of medication the least bit beneficial?

Big hugs.. stay strong,
Tessa