[DejaVu]

A Warm Hello to All,

My apologies for my absences and late responses.

The recent flare has been a significant challenge. This has been the most severe flare in years.
My PCP, my rheumatologist and an orthopedic specialist have been involved and doing their best to help out, which I appreciate.

The Update:

My recent foot injury is currently ruled a mid-foot sprain and is improving.
Ortho has referred me to PT/AT to see if we can strengthen both feet/ankles.

I am almost done with Lovenox injections, taken for superficial clotting issues in lower leg and foot.

I had sworn off clonidine, yet had to go back to it, as I'd needed it to offset the severe pain. I keep the dose very low, 1/2 of 0.1 mg twice daily.

(I am on opiate meds as well as prednisone and Depakote.)

I met my new neurologists this past week. One of the most frustrating issues with neurology has been the fact that there has not been continuity of care. A resident is assigned and then it's a toss, at each appointment, as to which Attending Neurologist one sees. It's absurd to follow a case without continuity.

I was sweating it out with the new resident, as he is constantly assigned to my case, until he leaves the hospital. He did a very thorough neuro exam; yet, he kept saying he had no experience with CRPS and would not feel comfortable prescribing even topical ketamine, ever. Ever?

He clearly did not realize the extent of my history. He'd commented there was still lots of reading for him to finish. Yes, indeed.
(I cannot bring him up-to-date in a 20 minute appointment and I told him so. I am made to wait for 6 months for an appointment and then told we cannot finish the appointment because not everyone is up-to speed on the case? He was starting to look very frazzled. I then told him it would be a lot easier on him if neurology scheduled more frequent appointments. I'd added the fact that I also need the follow-up care.)

When the Attending Neurologist entered, everything then changed.
He is new to our area.
He looked at my feet and noted the color changes (purple at that point).
He examined my feet and noted the swelling, the weakness, etc.
He examined me head-to-toe. He was very kind, very thorough, very insightful.

He said, " There is this condition, called CRPS. I suspect you have this, in addition to your other issues." (What a relief.) He could see many tests had been done and many had not been done. He is so new to this area, he was not sure of which tests would be available here. He is ordering (or has ordered) as many as he feels are warranted at this time. I do not yet know all of the testing he is ordering, as he was staying late with the resident to go over my chart, in order to list the tests he wants done.

It's complicated, no doubt, as I have multiple conditions co-occurring.

He added an AED named Aptiom to my meds.

So far, I know I am scheduled for a bone scan and another EMG.
He is also testing autonomic functioning.

I had addressed the lack of continuity of care. I gave him examples of the extremes I'd dealt with in different doctors. He cringed and told me he would follow my case himself. (I hope he can do so.)

I am very sedated with meds. Yet, I have much less pain. It's still very painful at times; yet, not as severe as it has been. I cannot function well on this amount of medication. I know it's necessary for now. I hope we can drop some meds, soon. I find the clonidine very depressing. It feels like the Aptiom adds to the sedation and to related blah. Patience....

Thank you for your patience. I still have many PMs awaiting a response. I appreciate your love and concern and will be writing back to you as soon as I can do so.


Much Love to ALL,
DejaVu

[Littlepaw]

Yeah!,

This sounds like a lot of great news. I am so glad you got the new attending.

The diagnosis on your foot is fantastic. Yes, really. A midfoot sprain will heal well and not require some awful surgical intervention.

When you start PT, you might consider asking around and finding someone who does manual therapy. It is a special certification and they move and adjust your bones very gently. My first PT did this, I had heard about it from its use by the Laker's trainer Gary Vitti. I found it to be VERY helpful adjusting mechanical issues in my foot that arose from imbalance after surgery. The foot is so darn complicated. It's like a Jenga puzzle in there. It's nice having someone who knows where everything ought to be and how it ought to move in relation to each part.

Don't fret on the temporary need for enough meds to make you loopy. The important thing is keeping your pain down while you heal!

Sending hugs and healing love,

[DejaVu]

Originally Posted by Littlepaw

Yeah!,

This sounds like a lot of great news. I am so glad you got the new attending.

The diagnosis on your foot is fantastic. Yes, really. A midfoot sprain will heal well and not require some awful surgical intervention.

When you start PT, you might consider asking around and finding someone who does manual therapy. It is a special certification and they move and adjust your bones very gently. My first PT did this, I had heard about it from its use by the Laker's trainer Gary Vitti. I found it to be VERY helpful adjusting mechanical issues in my foot that arose from imbalance after surgery. The foot is so darn complicated. It's like a Jenga puzzle in there. It's nice having someone who knows where everything ought to be and how it ought to move in relation to each part.

Don't fret on the temporary need for enough meds to make you loopy. The important thing is keeping your pain down while you heal!

Sending hugs and healing love,

Thanks, Littlepaw!

I am so very fortunate to have seen this attending. I had no idea who I would see, which is the way they work things. I don't mean to belittle the resident. I found his responses disconcerting. He was very paternal and close-minded... in 2015? I feel a good doctor does not pretend to know answers and keeps an open mind. My last resident was incredibly bright, relaxed, hilarious, and -- was stolen away by Duke. Kudos to him. He clearly has a fantastic future in neurology.

I, too, am so very happy to avoid foot surgery. It's taken time for ortho to feel sure about a sprain vs a break. I am thrilled there isn't a break. I am also thrilled to be rid of the boot!

My feet are in rough shape, I will admit. The neurologist did not show much enthusiasm for PT or strength training in my feet. When I saw him testing my feet, I'd wondered how I was walking at all. He'd wondered the same.

I saw my ortho the next day and told my ortho I refuse to believe we cannot impact my feet for the better, at least until we try. He examined my feet and told me of how sorry he is about my feet. He'd determined the deficits were neurological and he was closing out his involvement in my case. I asked him if he'd stay on in order to prescribe PT/AT for both feet. He was clearly tearful and said he would keep my case going in order to see what could be done. He ordered the PT when nobody else had done so. He will oversee the PT more closely.

Thanks for the tip on "manual therapy." I will look into this.
One of my friends is a Sports Chiropractor and Athletic Trainer. She is also now teaching Sports Medicine at the local medical school PT program. She's an outstanding person, in every way. She is highly skilled and also well-connected. I am sure she will help me to find someone experienced in manual therapy.

Thanks, too, for the encouragement concerning meds and feeling loopy.
I've always had a difficult time sitting in one place for very long. I do relax well. I just get ultra bored after awhile. At times like this, our minds can do a number on us, taking us into despair. I am very appreciative of your recent upbeat thread, by the way.


DejaVu

[bluesfan]

Hi DejaVu

Thanks for the updates. Glad to hear you're still in one piece albeit somewhat compromised in both physical and mental function - happens to the best of us .

Sounds like you might have lucked out with your new consultant - however new he is to the area it seems he's willing to get up to speed on your case and help find the testing you need. Good on you for being able to explain your situation (and previous issues on continuity of care) in the limited 20 mins appt.

Take care and rest up - just keep in touch when you're up to it.

Lotsa hugs

[DejaVu]

Hi Bluesfan,

I appreciate the sentiments expressed in your post.

I had made my point about the lack of time to get new doctors oriented to my case, etc. When a doctor knows a case well, a lot can happen in six months.

The attending had extended my appointment time while I was there.

He has also instructed the intern to schedule me for every 2 months and a 40-60 minute visit. The intern had really needed the attending's okay to make these changes anyway. He'd also clearly told the intern to be sure to return any call I made to his office. The attending was responding to my concerns about a long history about lack of responses from the department in the past.
He could clearly see the lengthy and chronic delays in my chart.

(This particular neurology department has some very reputable doctors/researchers practicing there. The department has never been efficient, and every so often, many doctors leave, seemingly, all at once. Attending doctors are also researchers and work hard to bring research monies to the university medical school/hospital. Many of them report they are not allowed enough time to see their patients. Just recently, and suddenly, there is no MD for people with MS, even though this is an MS center? Possibly the politics of a teaching hospital?)

I am fortunate to have the neuromuscular specialist I now have and I hope he stays. He was trained at an outstanding neuromuscular institute.

I am also fortunate to have this new attending. He has come from an outstanding neurological institute. This is why he'd immediately recognized CRPS signs/symptoms.

I am feeling very fortunate, all things considered.


DejaVu

[DejaVu]

Autumn in my favorite season. I love the colors and the cooler weather. I love spending time outdoors, taking in the beautiful colors, feeling the breeze blowing gently on my skin. Everything was beautiful, and simply perfect!

I was enjoying a fun Autumn, all was looking up... until I'd injured my foot while on a short hike (on a gorgeous, sunny, colorful Fall day).

This has been the flare from hell.

The pain, the meds, getting through the appointments and the tests.
I am not sure of which is worse... the pain or the med side-effects. I have never gotten along well with the AED meds.

I am very lucky in many ways, I know. I am deeply grateful.

Everything in life is temporary, thankfully. This change in status came on fast and unexpectedly. I do trust all things work together for our souls' best interests.

Even so, being human, I am looking forward to the next change, please.

I am so thankful we all have one another for mutual support.



DejaVu

[Hopeless]

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

[DejaVu]

Hi Hope,

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

I agree with you, totally.

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.


DejaVu

[DejaVu]

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.

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.

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!

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!

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.

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.

With Sincere Gratitude,
DejaVu

[Littlepaw]

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,