Hi DejaVu,

I just happened to stumble into your thread as I do not usually read many post on this forum since I know little to nothing about RSD/CRPS.

Just have a few short comments, other than I am so sorry to hear about your flare and all the subsequent problems.

Was really glad to hear that you will be scheduled for more frequent and longer visits with the new doc and that he seems to be one of the "good" ones. I certainly hope he will be around for a long time and helpful to you.

Oh, how sweet and brave of you to allow less proficient people stick you with your condition. To have someone miss and poke when you do NOT have your condition is painful enough so I can only imagine how awful it has been for you to endure that.

I agree that they need to learn but when it comes to people with your condition, you should be given someone of great proficiency. Let them learn on others that do not have the effects you suffer from a bad stick.

I think sometimes, some of the testing to which we are subjected is worst than the condition for which they are testing. It is worth it ONLY if it is really a necessary test but I have seen some docs run tests just to cover their butts and for conditions that are a very remote possibility. I can be a real "chicken" these days and I have refused some invasive testing that was merely to satisfy a doctor's "checklist". If a patient does not present with any symptoms or reason for some test procedures, then I refuse them. I make a doc justify to ME, that the test is essential to proper diagnosis and treatment. Sorry, I got a little off track here. I am NOT suggesting that any of the tests you are going through are not necessary, just that some tests can be painful. I just happen to throw in my opinion and my "yellow streak" for the occasionally aggressive doc that will test everything with no valid reason. That comment had nothing to do with your testing.

Sure hoping you find relief and wish you the best with all the testing. I will be thinking of you.

Hope

Thank You, Hope!
 

Hi Hope,

What a joy to sign in and to see your note here this morning!:D
I appreciate your taking the time to read and to respond.

I agree with you, totally.:hug:

In this case, I was already strapped to a table, with my arm supported off to the side. I did not realize a student would be trying to perform a direct intravenous injection. I am usually asked for verbal consent if a student is practicing a procedure. I was not asked to give consent. This team was in a hurry. I had expressed concern and had asked for: a smaller needle or a butterfly, for a topical anesthetic and for an experienced medical professional to complete the injection. I was then asked if I was afraid of needles. My response was "no," I am not afraid of needles, yet, all things considered, I feel we should be more careful about causing more pain today. I think the supervisor felt my concerns would be addressed if he just did the procedure fast and proficiently. He went ahead did it very quickly. He had the second needle in before he had addressed my concerns. (I think he felt he was addressing my concerns by moving fast and getting the job done.) He was clearly in a hurry and did not want patient feedback or questions. He was clearly irritated when my husband had a question before I went into the procedure room.

I feel all of the testing ordered is necessary. I do feel more awareness on the part of the medical staff would be very helpful. I also feel neurology should be offering more, and different treatment, calming the flare much more. I want to get the testing updated/completed locally and have the results available for a capable pain clinic with a CRPS specialist. The only local pain clinic has been abandoned by some very good pain medicine doctors. They were tired of interference from the hospital administration, which was not allowing these doctors to practice in the ways these doctors had felt were most beneficial to patients. Thus, I am likely going to have to go elsewhere for adequate treatment.

I have contacted a pain clinic in another state, in hopes they can see me soon. I continue to search for additional resources.
I think we have enough information to move forward with treatment. It's been "controversial" here simply because doctors here have not specialized in CRPS and are unsure of how to treat. While this new attending neurologist has just come from a highly reputable neurological institute, and he recognizes CRPS and knows which tests to order, I am reasonably sure he will find restrictions placed upon CRPS management at this hospital.

I hope to have a consult with a CRPS expert if possible, as soon as possible.
It just makes sense to put the fire out, if possible, as soon as possible.:)

:grouphug:
DejaVu

Hallelujah! Importance of Hope, Gratitude and Community
 

Since I have been moaning and groaning about the severity of this relapse, I feel it's important I also share when the sun breaks through the clouds. :D

The day before yesterday was one full of severe pain.:( Uggh!
I'd rather not admit to this, yet I feel it's important: I was in tears most of the day with severe pain. I was deeply discouraged by the severity of pain, the inability to walk on my feet, the lack of overall significant improvement. I think the needles and the poking and prodding at recent testing appointments had likely aggravated the pain further. I honestly was not sure of how much longer I could tolerate the severity and was sure something else had to be added to my regimen in order to simply survive. The last few threads of hope were fraying and ready to break. :(

Yesterday, I had to arise early in order to get to another testing appointment at the hospital.

Much to my surprise, I was able to walk into the hospital and was able to walk to appointments within this large facility. I did not need a wheelchair. :)

I was able to walk with the assistance of a single forearm crutch only.

I then pushed it a bit. As a former dedicated athlete, "pushing it" is in my blood, I cannot help it. :rolleyes:

DH was with me and he'd wanted to treat me to a new, fun and beautiful café. We had a lovely time, seated by a gorgeous fireplace while looking out at the majestic mountain range. Spectacular! :D

On the way home, we had stopped briefly at a craft store and a book store.
I did not hang out at the bookstore for hours, like I do at times, yet the brief visit was helpful in nourishing my inner bookworm. ;)

By the way, the adult coloring books and many Zentangle supplies were available in abundance, immediately at the front of both of these stores. :)

So, wow! What an unexpected turn in events! :D

That was yesterday.

I was able to sleep well, after dutifully completing my intensive foot/lower leg massage with magnesium chloride. After a full night of sound sleep, this morning I was able to walk around on two levels of our home without a cane or a crutch.

I feel extra fatigue, yet the pain is staying at a very manageable level.
I will, most likely, stretch and strengthen today, will attend to returning phone calls and will do a few things around the house. I hope to get out in public again tomorrow. I hope to enjoy walking further distances, within reason.

I want to count my blessings whenever they show up. I want to express my sincere gratitude for any/all improvements.

I have no idea how things will be in the next hour, later today, tonight or tomorrow. It's quite likely I will go back into some degree of pain at some point.

I want to fully appreciate the moments in which I am enjoying comfort, function, fun, joy and more. :Head-Spin:

Thank you, each of you, for your love and support. I have received tremendous support from friends here at NT, in many different forums here. Each interaction has been very important to me, has added to my well-being.
We each have an impact upon one another; community is important. :grouphug:

With Sincere Gratitude,
DejaVu

Yeah! So happy for the good update!

I agree, the poking and prodding and the stress from that probably ticked things right off.

That is wonderful you had such a lovely day yesterday! Those are balm for the soul and who doesn't love getting out to a cafe and bookstore!

So here is my caveat...stick with the plan to rest today. Pushing is good if done methodically. As you begin to find these days that you can do more take the next day off until you are sure you can increase activity to two days in a row. ;) Don't wanna backslide if you can avoid it!

Thanks for the news. We are all rooting for your continued progress and healing.
Sending hugs, :hug:

With Love and Appreciation to You, Littlepaw
 

Thanks, Littlepaw! :hug:

You have so much knowledge, wisdom and such a HUGE heart for such a "tired little squirrel!" :ROTFLMAO: :You-Rock:

(Yes, I saw your "tired little squirrel" reference in a different forum. 'Twas cute! );)

I deeply appreciate all of your input, on all levels.
Thanks so much for sharing your knowledge, your wisdom, your intuitions, your love and encouragement.

:hug:
Deja

Heres hoping for more good days, more bookstores, more cafes, more of the things that make life worth living! ~mac

Joy
 

Thank you, mac! :D

We all need nourishment on all levels.
I find it such a relief to have a half-way "normal" day.

In the past, I was not content with looking at the mountains, I'd needed to be hiking them. I used to be upset with having to use a forearm crutch, now I am happy if I can get by with one. A 15 minute stop at a bookstore used to be such a major disappointment; now it's a major blessing. :D

I am much more grateful for the little things in life. :sing:

May we all find Joy in daily life!:trampoline:

Love and Prayers,
DejaVu

I don't remember if you respond well to lidocaine patches? If yes, bring a couple with you any time you have a doc appointment and apply asap to injection or puncture areas.

Dejavu,

Thank you so much! I wish you weren't going through this but we are blessed to have you on board with us. :)

I always find myself lifted by your kind and eloquent posts and know others do too! :circlelove:

I WAS a tired little squirrel that day, it was past my bedtime...I'm feeling good now.

Great idea I have some and I never thought of that. I know the suggestion was for Dejavu, but thanks!`mac:)