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

I drink lots of tea, chamomile and tension tamer. That seems to help. I do lots of breathing techniques, and heat! I have to stay warm. I have found out that if I am cold I get worse. I always carry a blanket everywhere! I am starting to learn little tricks here and there to help me get through the day, but some days I just can't take it. As long as I had my pain meds (the dose I was taking) I could actually live somewhat, but now I have a hard time doing anything. I hate taking narcotics but if they can help me take care of myself and my daughter and help me live a somewhat life, then I will do what I have to.

I don't know. I am doing some research to figure it out.

Great to hear at least a few things are working. I too get much worse if I am cold and I live in the mountains so that doesn't help :/

Here are a few things that have worked some for me:
Epsom salt soaks... LOVE LOVE LOVE I sometimes take 2-3 warm baths a day. During my soaks I try to desensitize by using several different textured cloths and moisturizing soaps on my leg. When my husband is home I ask him to gently touch my leg (as I look away) and even just hold it there for as long as I can take it. This has been helping with the sensitivity. The epsom salt really helps with the swelling and warms me :)

Compression pants (like running capris or compression wraps) this also helps with the swelling. I also have found that it is better to wear things that apply constant pressure like tights, because with loose fitted clothing the occasional touch of clothing to the skin escalates the pain dramatically as the day goes on. So even though at first putting on things that are form fitted is uncomfortable/painful once it on and there is a constant even pressure that is much better.

I constantly use all types of distraction techniques. At the worst of times a great comedy often works wonders. lol.. the movie "Dumb and Dumber" or even Nat. Lampoons Christmas Vacation :)

My recumbent bike has been a true blessing.. I use it 3 times a day to help manage pain and keep my hip/thigh moving which helps the blood flow and lifts my spirits immensely. lol.. it's parked right in my living room!!

Medications:
Gabapentin 3000mg daily
Celebrex 200mg twice daily
Tylenol as needed
Voltaren gel
Specially formulated compound cream

My fav.. lidoderm patches I wear 2 patches 12 hours per day. Usually 6PM - 6AM when pain for me is at its worst. If I want to enjoy family/friends I will wear them during the day instead so that I can hide the pain more easily.

I do hope maybe something on my list will help you if you haven't already tried them. Like you I hate narcs so I only take them when nothing else is helping me cope. I keep the doses low and only take enough to get some sleep which makes it easier to handle pain during the day.

Anyways.. take good care and God Bless,
Tessa

Yeah, um......that's not how pain medication/effective pain management works. Ask him how many terminally ill cancer patients he knows of who still have pain, but have their docs decrease their pain meds.

One of the reasons that doesn't happen is because it would be CRUEL and unethical. It's the same for him to treat you that way. Another reason is because when the pain seems worse, as yours does now, you can't tell if the condition is getting worse or if it's just that the pain med was decreased. Doh !

If you have post op pain which is managed with meds, it is reasonable to decrease the dosing awhile after the surgery BECAUSE THE PAIN SHOULD BE LESS. Decreasing the dose when it is KNOWN the pain is ongoing at the same SEVERE level is not okay.

Please tell your doc someone needs a pain management refresher course......and it's NOT me.

I'm sorry that he's all you have to work with right now, Angelina :(

I talked to my doctor and he put me back on my original meds. I am not back to where I was yet. I think I need to get 'caught up' then my pain will calm down. This crazy weather we have been having is NOT helping! Storms and temp change is sooooo not good for pain. But at least I have my pain meds back and that is helping. :) Tomorrow I will be talking to my Family doctor. I am nervous. I don't really know what to tell him, or where I need to go from here.

Oh I am so happy to hear you were able to talk to your doctor and get your meds back on track; that must be such a huge stress relief.

Were you able to disguss anything else like maybe a referral to another doctor?

Be blessed,
Tessa

You must do the thing which you think you cannot do.
 

After I read your post, this quote came to mind.

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.

Eleanor Roosevelt (1884-1962)

I can relate in every way to what you are going through. You do sometimes feel as though you’re being punished and that your body is like a torture chamber. You want to be your former self. I believe there is a grieving process while becoming this new version of you.

IMO you MUST find a doctor who will treat you, and work to get your pain under some kind of control. Even if that means that it will be a hike to do so. Hopefully you will find someone who can help.

I know it feels like no one gets it, but anyone on this forum with this condition knows exactly where you are at. I promise you that I have had days where I have had thoughts of checking out. I always come back to how awful that would be for those who love me. I have children who still need me, to the point of my exhaustion sometimes, but they really do still need their mom even if I’m not the same person I used to be. My point is, you can do this, but it’s going to be work (and that sucks, but it is true).

I feel for your situation and how hard things are for you right now. PLEASE remember that every ounce of stress is causing you more pain. I say this and yet I too am still trying to learn the art of Zen. Try to do something like take a bath. Something that will relax your body. Try and distract yourself. Perhaps that will help. Look around at the stressors in your life and start to figure out what can be eliminated.

Your relationships, all of them probably, will change and evolve. Those who are true to you, will recognize that you can only do what you can do, and will be as accommodating as possible. Many times I have felt the frustration of trying to enjoy a “good time” only for it to be cut short because my body was screaming. I think there is a fair amount of work to learn acceptance. I am not even sure that is possible for me. No doubt that I get angry and sad from time to time. Hell yeah, it’s frustrating, and not one person that I know personally could ever possibly comprehend what I have been through, or what I’m going through now, or my fears about what is to come.

All this to say, hang in there Angelina! You CAN do this, and somehow, someway, perhaps it will all be okay.
:hug:

Hooray! That is a step forward :)

SloRian is right, this is good news! I had not read the update when I posted earlier. So glad that you are getting some help!

Whoop!! :D

You go girl!

Hope the pain retreats quickly for you :)

Bram.

I thank you for this. I have started to try to find the stressors in my life and eliminate them. I am having a hard time with one of these because the main one is my youngest sister. She is constantly putting me down telling me that she has RSD too and that I should handle it better like she does. (which I know she doesn't have it by facts), Tells me that I am not good enough, just always has bad things to say to me...things that are hurtful and put me down and stress me out. (Like I am not a good mother or person in general because of my pain) So I have decided to just avoid her as much as possible. Which really hurts and took ALOT of thought and trying to work through it first but I just couldn't take it. It is hard getting used to your relationships changing. Having people judge you because you have changed but they will not find out why, they just judge you instead and assume the worse.

I do believe in distraction. I have a lot of them. They help so much. I am very grateful for all my distraction techniques and for all of you on here!

Finz; you are so right. I don't know how I would deal with the pain. I am fortunate to have a doctor who specializes in Pain Management and whose opjective is to help me get thru each day with as little as pain as possible.

Gerry

Angelina,
 

Although I have a primary care doctor; he is well aware of my need to be involved with a doctor specializing in Pain Management.

In fact, when I have had surgeries, I am fortunate my Pain Doc is affiliated with the same hospitals because he is aware of the additional meds needed because of my spinal issues, as well as periphereal neuropathy. The other doctors turn over my pain care to him.

Angelina, I do hope you will get the necessary care you need to make each day more tolerable.


Gerry

Sorry for the slow response, I was under sedation for nerve block. Have you already tried those? Sorry, I should remember since I know you already went through he!! with the trial SCS.
I hope your primary doc. gave you a referral to a different pain doc. That's how I found a good one - I went through 2 - asked for ANOTHER referral and think I have a good one now.
I'm glad you're eliminating as much negativity as possible. My P.T. gave me the best advice that you must be your own best advocate because so few people understand our condition.
No matter how much I just wish someone would speak out for me I try to remind myself what she said. Then I try to make myself say & do what I wish someone would do for me.
On top of your CRPS I know you've had incredible hurdles as well. My heart goes out to you and I hope you feel the support over the miles. :hug:

I have done nerve blocks. My doctor wants me to do acupuncture now. I have already been to the pain management doctors in my area and they have already sent me on my way saying they can't help me. :( Thank you for the support. I really need it right now. I can feel my positivity slipping away. :(

Angelina,
 

I am so sorry you have not been properly treated with Pain Management physicians. Most of them realize what chronic pain can do to a person and are more proactive in treating the pain. I was fortunate to be referred to my current Pain Management doctor by my orthopaedic doctor.

Hold on Angelina........ I pray you will soon find the help you need in dealing with all this pain.:hug:


Gerry

Hi Ang,

I'm relieved that you got your doc to put you back on your previous med plan. That's moving in the right direction. I understand that it's only a temporary fix. If he doesn't "get" it, we can all guess that he won't have the best long term pain management plan for you. I understand that searching out a doc who does "get" it is difficult.

I'm lucky to have a great neurologist right now. Because my insurance has denied other treatments for my RSD, pain meds are my plan for now. I currently take Cymbalta, Neurontin, Nortriptyline, Piroxicam, Norco, and MS Contin. I am in a MUCH better place pain management wise than I was years ago. Life is by no means perfect. I still have to recognize my limitations, so I can't do everything I'd like to (or, even most of it :rolleyes:), but I can do more than I could and I can enjoy more time with friends and family. I can LIVE, instead of just being alive. My neuro writes for my narcotics. Some idiot at my health insurance company doesn't like my neuro, and he is no longer on their list of preferred providers. That means that I can't use my insurance to pay for them. I can only afford them (over $200 a month) because I'm still married. After my youngest graduates from high school next year and I get divorced, I'll be screwed. I SHOULD be looking for a new neuro now, even though I LOVE mine, and start saving that money, but it's so hard to figure out how to find another doc who gets it.

Let's be honest, we can't just call around to dr's offices and ask the receptionist if that doc prescribes narcotics. We REALLY can't just try a new doc, transfers our records to him, go in for a visit and find out THEN that he doesn't prescribe meds, so then we have to try another new doc, and another.....and now we are "doctor shopping". It is hard to not appear to be "drug seeking" when we are, in fact, seeking meds to help with our pain OR a cure/treatment that would fix everything. I don't want to ask my neuro for a referral to another doc, because I don't want to insult him or change neuros. I have asked my primary doc to help with my dilemma, she refused. I would like a new primary MD, but I just switched to her 2 years ago and I don't want to switch again now and then again in the next year or two post divorce when I move.....because that would look like doctor shopping.

I understand that it's difficult to search out the right doc. Transportation issues.....how far away the office is, how often you might need to see him, if you can tolerate driving, if you need to arrange a ride.....can be a huge issue. Wasting more time waiting for an appointment with yet another "pain specialist" who only does injections that don't work for you......Feeling uncomfortable about insinuations by some docs/their staff because you are a chronic pain patient......It's easier to just try to get through the day and say you'll "deal with it tomorrow".

Well said Finz - you should be assisted by the RSD groups to publish that in every medical paper around, send a copy to every doctors surgery in the country, not to mention the drug companies and insurance guys. If only they understand the difference between a chronic pain sufferer, and a drug seeker. The two are poles apart...

Hope you are having a better day Angelina :)

Bram.