Aa
New to RSD after Surgery & already Stage II
I have been diagnosed with RSD, and the last 2 days, collapsed in exhaustion after 2 weeks of a flare that turned into worsening and spread of the RSD. It started in the upper leg (boy was the surgeon who operated on my hip defensive!!!) and as I was advised by the surgeon (maybe WHY he's defensive???) to ice. Once pack turned into 2 into 3 into 5, and you get the picture. Fortunately I have a friend with RSD who said "GET IT OFF NOW, and I mean NOW!!!"
I've since begun working with a new PM doctor who is a gem, and has approached it with multimodal therapy: meds yes, but not just pain meds--also stuff like Tegretol, and as well gabapentin. Idk if there's other meds that will help, but my new PCP is sending me to a neurologist at the hospital to find out--I am HER first RSD patient (she's young, but darned good, as is my PM & they talk frequently, and often."
I am looking mainly for emotional support because I am finding it has spread. The allodynia and hyperalgesia is into my toes on that same side, just my foot on the left, and my right hand and wrist mainly at night, extending up halfways up my forearm. I feel like I am either nuts or the burning in my left fingers at night.
But the last 2-3 weeks, maybe more, I have flared up so bad, though I was properly managed, sleep was nearly impossible, in part for my own stubbornness...and now I've spent the last 2 days sleeping--waking every 4-5 hours for an hour or 2 to eat, go to the bathroom, etc, but I just could not stay awake...
I am finally awake, finally coming back to life...or so it feels. I am starting an "RSD support" site; people with IP (Intractable pain) will be welcome, but I need the emotional support because this has done a 180 to my life. I had chronic pain before, have survived cancer, but I feel like this is a new creature. It's been 2 1/2 months, and I am already in Stage 2, and it is spreading. I guess I am just looking for support--not sympathy--support.
God bless to you all who suffer this wicked thing!
Jenna37
I've since begun working with a new PM doctor who is a gem, and has approached it with multimodal therapy: meds yes, but not just pain meds--also stuff like Tegretol, and as well gabapentin. Idk if there's other meds that will help, but my new PCP is sending me to a neurologist at the hospital to find out--I am HER first RSD patient (she's young, but darned good, as is my PM & they talk frequently, and often."
I am looking mainly for emotional support because I am finding it has spread. The allodynia and hyperalgesia is into my toes on that same side, just my foot on the left, and my right hand and wrist mainly at night, extending up halfways up my forearm. I feel like I am either nuts or the burning in my left fingers at night.
But the last 2-3 weeks, maybe more, I have flared up so bad, though I was properly managed, sleep was nearly impossible, in part for my own stubbornness...and now I've spent the last 2 days sleeping--waking every 4-5 hours for an hour or 2 to eat, go to the bathroom, etc, but I just could not stay awake...
I am finally awake, finally coming back to life...or so it feels. I am starting an "RSD support" site; people with IP (Intractable pain) will be welcome, but I need the emotional support because this has done a 180 to my life. I had chronic pain before, have survived cancer, but I feel like this is a new creature. It's been 2 1/2 months, and I am already in Stage 2, and it is spreading. I guess I am just looking for support--not sympathy--support.
God bless to you all who suffer this wicked thing!
Jenna37
Hi,
I had a surgery where the doc made a mistake. I woke up with extrem pain which could not be controlled even though they maxed out on meds. Later my arm and hand blew up to balloons and the pain never has ended. The doc never sent me for treatment and later I was diagnosed with RSD. I can't be fixed and have had a number of nerve blocks. They build on each other but due to the frequency they can't give me a local before the 2 injections into my spine as its to frequent. When emotions are painful I feel extreme physical pain. My career and quality of life has also suffered. Do others feel the same? Does your infected area constantly burn and hurt? Has this damaged other areas due to compensating? I am in physical therapy due to other body parts compensating and getting weaker.
Any advice is appreciated.
I had a surgery where the doc made a mistake. I woke up with extrem pain which could not be controlled even though they maxed out on meds. Later my arm and hand blew up to balloons and the pain never has ended. The doc never sent me for treatment and later I was diagnosed with RSD. I can't be fixed and have had a number of nerve blocks. They build on each other but due to the frequency they can't give me a local before the 2 injections into my spine as its to frequent. When emotions are painful I feel extreme physical pain. My career and quality of life has also suffered. Do others feel the same? Does your infected area constantly burn and hurt? Has this damaged other areas due to compensating? I am in physical therapy due to other body parts compensating and getting weaker.
Any advice is appreciated.
Hello,
Mellie, since I am kinda in a huge flare, before I forget, for the cards, go to www.rsdsa.org, either by phone call, or download their PDF versions of the wallet cards--there are two--and when they send you the "New Member packet" they will include a couple more, but after that, if you want to order more, you can, but there is a cost, although nominal. Actually, I found the page, so here it is directly for all their publications; which you can specifically request: http://www.rsdsa.org/publications.html .
Also helpful I have found is "The Intractable Pain Patient's Handbook for Survival" which is found in PDF at
http://pain-topics.org/pdf/IntractablePainSurvival.pdf
"Medifocus Guidebook" which is updated each year I believe, and although a bit pricey; I plan to order this next payday...(this is why my Texas friend has been my lifeblood in surviving this 1st few months, just so far, because even having just printed out the IP Survival booklet (about 36 pages, but worth every one! And no, this one is FREE, although the Medifocus one is not :( )
https://www.medifocus.com/2009/order2.php?ordertype=mail&gid=NR015&a=a&assoc=mda-rsds.org
Again, RSDSA members get a discount, Milliet, so it's a good thing to have. It's usually a $25 membership fee, but if you don't have the money, just say so, and they'll put you in anyhow; they are cognizant that many of us are on disability, or even worse off than that, and they discount their "store" stuff for membes as well (the "store" is a sheet of paper with informational guides, etc, t-shirts, and so forth that has a regular price and a discounted price for RSDSA members).
But my family has NO CLUE. My dad asks what it is. I printed out the basic info sheet-2 pages, and the more detailed one-6 pages. He took them both: we had gone out to breakfast at Denny's. BOTH were left on the table. I grabbed them and stuck them in the console of his car. When I got home, both were in my bag. Guess I know where he stands. Well he is going to learn where I stand the next time something comes up.
My mother behaves as if this is a way in which I am trying to get attention, when her stupid shopping trip last Monday is what triggered this whole thing--and it hasn't just grown teeth and fangs, it's gotten TALONS Ugh!!! Horrible. I did know I could swell like that--I have had 9 orthopedic surgeries on my right knee, so maybe I was RSD waiting in the wings (?), but the colors--oh, wow!!!
But last Monday, my mom took me shopping; we stopped and had lunch 1st. But she dragged me through every single isle of Winco, and when we walked out, I was hitting Category 3, and the fat lady was warming up for her solo--ohhhh boy!!! Costco is next door, of COURSE we had to go,but finally, we were waiting for a fresh rotisserie chicken, and the second they were out, I grabbed the 1st two, she wants to know if they were the largest. I said, teeth gritted, "YES, WE'RE LEAVING--NOW!!!" wondering what shade my leg was--my arm was bright red. Even the narcissist she is, excuse me but it is true--she has the official diagnosis: I only agreed to spend time with her because she is retiring and moving to Florida (DREAMING OF THIS DAY!!!!!!), but she took one look at me, and followed me to the cash register.
But we got to the car, I madly shoved everything in as fast as I could. I put the basket behind us, got in, and CAREFULLY pulled up the leg of my sweatpants: covered with sweat a nice shade of purple.
She offered me some aspirin. Right. I took the aspirin because I knew it would help my BTP meds work when I took them later. They are all 100% against me taking pain meds. But you know, the way I see it: I am 37. The following apply/do not apply:
-I have reached the age of majority (18)
-I do not live under their roofs
-I do not accept financial assistance from them.
-They do not make my medical premiums
-They do not make my medical copays for doctor visits
-They do not make or assist with my medication copays.
My mother called and asked how I was feeling. I said i was feeling poorly but that I was being treated, and would be fine. She asked what was wrong. I said it was nothing major (total lie = bad kidney infection & they'd wanted me initially hospitalized), and I was fine--just did not feel well. Demands to know what it was--exactly said, "What is your STATUS report?" I wanted to laugh--at 37, Mommy wants a "status report????"
I asked what she meant--what was to be included. She replied--"How is your (named various arthritic joints, ZERO on the RSD-not a word, and then, naturally, what meds do they have you on."
"Well, Mother, that is between my doctor and I. You really ever only want to work into my life, and what I am 'up to.'" Until that changes: you get nothing.
She hung up on me. Three weeks of peace and quiet.
And she, like everyone, has kept saying "Exercise, Exercise, Exercise, move move move." But here is the problem. I've also been diagnosed with ME (Myalgic Encaphalomyelitis), an extremely severe form CFS: for CFS, the prescribed treatment IS an exercise program; and physical therapy. But the closest clinic that is willing to accept me as a patient with both RSD and ME is in Canada, and the fee for treatment is more money than I have. They did just begin doing Skype calls--even those are $400/consult. Yikes, no kidding!!!!!
So my PCP is trying to help figure out what to do from here. I do need to get off my butt and call her to discuss the disaster at the neurologist.
But thanks for your support....My apologies for the length; I get kinda wordy at times...LOL, but today things are looking up--The pain is bad, but the severe fatigue is better--I think.
Love to all,
Jenna
Mellie, since I am kinda in a huge flare, before I forget, for the cards, go to www.rsdsa.org, either by phone call, or download their PDF versions of the wallet cards--there are two--and when they send you the "New Member packet" they will include a couple more, but after that, if you want to order more, you can, but there is a cost, although nominal. Actually, I found the page, so here it is directly for all their publications; which you can specifically request: http://www.rsdsa.org/publications.html .
Also helpful I have found is "The Intractable Pain Patient's Handbook for Survival" which is found in PDF at
http://pain-topics.org/pdf/IntractablePainSurvival.pdf
"Medifocus Guidebook" which is updated each year I believe, and although a bit pricey; I plan to order this next payday...(this is why my Texas friend has been my lifeblood in surviving this 1st few months, just so far, because even having just printed out the IP Survival booklet (about 36 pages, but worth every one! And no, this one is FREE, although the Medifocus one is not :( )
https://www.medifocus.com/2009/order2.php?ordertype=mail&gid=NR015&a=a&assoc=mda-rsds.org
Again, RSDSA members get a discount, Milliet, so it's a good thing to have. It's usually a $25 membership fee, but if you don't have the money, just say so, and they'll put you in anyhow; they are cognizant that many of us are on disability, or even worse off than that, and they discount their "store" stuff for membes as well (the "store" is a sheet of paper with informational guides, etc, t-shirts, and so forth that has a regular price and a discounted price for RSDSA members).
But my family has NO CLUE. My dad asks what it is. I printed out the basic info sheet-2 pages, and the more detailed one-6 pages. He took them both: we had gone out to breakfast at Denny's. BOTH were left on the table. I grabbed them and stuck them in the console of his car. When I got home, both were in my bag. Guess I know where he stands. Well he is going to learn where I stand the next time something comes up.
My mother behaves as if this is a way in which I am trying to get attention, when her stupid shopping trip last Monday is what triggered this whole thing--and it hasn't just grown teeth and fangs, it's gotten TALONS Ugh!!! Horrible. I did know I could swell like that--I have had 9 orthopedic surgeries on my right knee, so maybe I was RSD waiting in the wings (?), but the colors--oh, wow!!!
But last Monday, my mom took me shopping; we stopped and had lunch 1st. But she dragged me through every single isle of Winco, and when we walked out, I was hitting Category 3, and the fat lady was warming up for her solo--ohhhh boy!!! Costco is next door, of COURSE we had to go,but finally, we were waiting for a fresh rotisserie chicken, and the second they were out, I grabbed the 1st two, she wants to know if they were the largest. I said, teeth gritted, "YES, WE'RE LEAVING--NOW!!!" wondering what shade my leg was--my arm was bright red. Even the narcissist she is, excuse me but it is true--she has the official diagnosis: I only agreed to spend time with her because she is retiring and moving to Florida (DREAMING OF THIS DAY!!!!!!), but she took one look at me, and followed me to the cash register.
But we got to the car, I madly shoved everything in as fast as I could. I put the basket behind us, got in, and CAREFULLY pulled up the leg of my sweatpants: covered with sweat a nice shade of purple.
She offered me some aspirin. Right. I took the aspirin because I knew it would help my BTP meds work when I took them later. They are all 100% against me taking pain meds. But you know, the way I see it: I am 37. The following apply/do not apply:
-I have reached the age of majority (18)
-I do not live under their roofs
-I do not accept financial assistance from them.
-They do not make my medical premiums
-They do not make my medical copays for doctor visits
-They do not make or assist with my medication copays.
My mother called and asked how I was feeling. I said i was feeling poorly but that I was being treated, and would be fine. She asked what was wrong. I said it was nothing major (total lie = bad kidney infection & they'd wanted me initially hospitalized), and I was fine--just did not feel well. Demands to know what it was--exactly said, "What is your STATUS report?" I wanted to laugh--at 37, Mommy wants a "status report????"
I asked what she meant--what was to be included. She replied--"How is your (named various arthritic joints, ZERO on the RSD-not a word, and then, naturally, what meds do they have you on."
"Well, Mother, that is between my doctor and I. You really ever only want to work into my life, and what I am 'up to.'" Until that changes: you get nothing.
She hung up on me. Three weeks of peace and quiet.
And she, like everyone, has kept saying "Exercise, Exercise, Exercise, move move move." But here is the problem. I've also been diagnosed with ME (Myalgic Encaphalomyelitis), an extremely severe form CFS: for CFS, the prescribed treatment IS an exercise program; and physical therapy. But the closest clinic that is willing to accept me as a patient with both RSD and ME is in Canada, and the fee for treatment is more money than I have. They did just begin doing Skype calls--even those are $400/consult. Yikes, no kidding!!!!!
So my PCP is trying to help figure out what to do from here. I do need to get off my butt and call her to discuss the disaster at the neurologist.
But thanks for your support....My apologies for the length; I get kinda wordy at times...LOL, but today things are looking up--The pain is bad, but the severe fatigue is better--I think.
Love to all,
Jenna
Thanks for the response--NP on the "tardiness..." Lord knows I have been "tardy" many times.
Part of my problem is my family's refusal to accept my diagnosis--my mother dragged me out to lunch, then the grocery store, then Costco, and finally at Costco, I was so focused on biting my lip and not screaming in pain--knowing that the aspirin in the baset was going to be GROSSLY insufficent, or I;d have opened the stupid bottle and swallowed 2-3 (3 is like 2 extra strength) dry. I hadnt any of my own meds with me since mine are liquid, and the bottles are harder to shove into your pocket.
I am going to get a backpack and put together my "RSD Travel kit" for those tortourous days--I got home, and I was stiff, sore, and could barely move. My leg was turning red--later purple--and I lifted my sweatpants, and the goosbumps were plain while the rest of me was dripping with sweat; and I asked her, "You think this does not HURT???" She suggested putting my leg up,MAYBE taking the gabapentin and having something to eat!!! LOL, right--in that condition, I was going to fix much to eat except rip some meat off the chicken--AFTER MY PAIN MEDS.
It took 2 doses within the prescribed range to get up and even rip the meat off the chicken--I couldn't type, and now this morning, I am a WRECK!!!!!! my leg won't bend because my knee is swollen--I use Flector patches, and until TSD, they would drain it and have me ice it; obviously both of those are out.
I am supposed to see my therapist at 2pm--she'd given me "homework" whcih I haven't been able to even read--the spasms are so bad, I am just stiff. I am tempted to go to the ER for just that, but have no cash for the cab, and I know the 911 people would be pretty upset if I called them for this....so it's a tough start to a probable long day.
I seem to have a really bad :a hard time setting limits with knowing/not knowing what I can and cannot do. I do carry a card from the RSDSA that they give out 1-2 copies to those who sign up (memberships are free if you can't afford it), and it says "Here's How You Can Help Me." The first one is "Please ask before you touch me...as it can cause me great pain."
I also do always carry a small printed copy of my REAL meds--and that they have to be crushed or liquid (or patch) or I cannot digest them since I have had a previous bowel resection many years ago-I even have to do this with antibiotics.
I've had CP for years--I have vertebral dessication (drying out--different from osteoporosis, but really not by much) that doesn't allow my compression fractures (which cause that "pleasant" sciatica) to heal, so I had already been living with that when I had some moderate hip surgery and in 2 weeks, that wicked burning pain set in--BELOW my incision, I kept stressing to them, and I was kept told to ice it. It initially felt better, but kept seemed to get worse.
My one great forture though is my PM doc. He looked at what the so-called "pain clinic" at the hospital had put me on, kind of scoffed at it, and totally re-vamped it. Partly to do with the fact that I walked stiffly into his office, feeling horriby nauseous from the pain--asked his receptionist where the bathroom is, and she paused--then I said--"BUCKET---NOW!!!" and lost my lunch (previous day) in his wastebasket... He came out front, and said, "OK, this is not going to work--come back here with me," and his receptionist handed him the trash can and said, "I'M NOT cleaning THAT UP." HE did it...LOL I left the office after a fat shot for pain in my hip--carefully done, of course, with a tiny needle, but a LOT of medication; and THEY paid for my cab home since I had taken the bus. And prescriptions that would keep a few druggies happy for a long time.
But HE is the FIRST ONE I have ever, EVER been to who has listened to me--first lobby I threw up in, but I've had runs to many bathrooms--my first response to severely increased pain is to get sick. So this morning, I cut up some fruit, tossed in some soy milk and protein powder, and put it in a large juice container--cus it's about all I'm going to be able to eat/drink for a while. But it's nutritionally sound, and better than Ensure (cheaper too).
I know this is getting long, and I apologize, but I really haven't had a place to go w/o being criticized for taking the powerful medications I do (I also use stuff like 650mg aspirin TID, gabapentin, and carbamazepine, but I increase stuff like the gabapentin before ANY of the pain meds.
What makes me nuts is the people who GET THEMSELVES "incorrectly" DX'd with RSD and other conditions like it TO GET THE MEDS!!!! I have had people tell me that all they needed to take care of their RSD pain, and it gave them days of "O" and "1" days of pain when "proper" doses (of between 400-700mg of morphine, according to what they told me), so I have been kind of watching this forum before posting, if you'll forgive me.
I used to be an ER nurse, and it broke my heart; nearly crushed me; to give up my career when my back problems forced disability. But I was having hopes of returning to work, and getting off much of the pain meds.
But now I feel like RSD has stolen that from me. That's why I "hit the skids."
So anyone-comment away--whatever helps. I just had someone give me an exercise ball, etc.
Oh, btw, I have had severe arthritis in the knee of my affected leg, that has me sometimes DYING to ice it, but now I don't have to.....!!!!!! I've been using FLECTOR patches, an NSAID patch (not aspirin or tylenol, a REAL NSAID---go to
http://www.flectorpatch.com/What-Is-FLECTOR-Patch.cfm
Check the "Box warnings for contraindications (asthma & sulfa allergy, I have both, a MILD case of asthma, ONLY USE albuterol-quitting smoking helps-and a reaction to sulfa drugs, which I also have, so they dispensed only one box, and I hung out at the office for a couple hours after puttint tje first one on, and after they were reassured I was ok, I went home), but there's other cardiovascular warnings that come with NSAID use, bleeding, etc.). I have Blue Cross, and they are a Tier 4 drug, but I use 100% assistance, so I simply pay the brand copay.
But they have allowed me to have a LOT of relief on my knee pain, and I tell ya, it's a mess in there!!!
I will shut up now, sorry about the length
Part of my problem is my family's refusal to accept my diagnosis--my mother dragged me out to lunch, then the grocery store, then Costco, and finally at Costco, I was so focused on biting my lip and not screaming in pain--knowing that the aspirin in the baset was going to be GROSSLY insufficent, or I;d have opened the stupid bottle and swallowed 2-3 (3 is like 2 extra strength) dry. I hadnt any of my own meds with me since mine are liquid, and the bottles are harder to shove into your pocket.
I am going to get a backpack and put together my "RSD Travel kit" for those tortourous days--I got home, and I was stiff, sore, and could barely move. My leg was turning red--later purple--and I lifted my sweatpants, and the goosbumps were plain while the rest of me was dripping with sweat; and I asked her, "You think this does not HURT???" She suggested putting my leg up,MAYBE taking the gabapentin and having something to eat!!! LOL, right--in that condition, I was going to fix much to eat except rip some meat off the chicken--AFTER MY PAIN MEDS.
It took 2 doses within the prescribed range to get up and even rip the meat off the chicken--I couldn't type, and now this morning, I am a WRECK!!!!!! my leg won't bend because my knee is swollen--I use Flector patches, and until TSD, they would drain it and have me ice it; obviously both of those are out.
I am supposed to see my therapist at 2pm--she'd given me "homework" whcih I haven't been able to even read--the spasms are so bad, I am just stiff. I am tempted to go to the ER for just that, but have no cash for the cab, and I know the 911 people would be pretty upset if I called them for this....so it's a tough start to a probable long day.
I seem to have a really bad :a hard time setting limits with knowing/not knowing what I can and cannot do. I do carry a card from the RSDSA that they give out 1-2 copies to those who sign up (memberships are free if you can't afford it), and it says "Here's How You Can Help Me." The first one is "Please ask before you touch me...as it can cause me great pain."
I also do always carry a small printed copy of my REAL meds--and that they have to be crushed or liquid (or patch) or I cannot digest them since I have had a previous bowel resection many years ago-I even have to do this with antibiotics.
I've had CP for years--I have vertebral dessication (drying out--different from osteoporosis, but really not by much) that doesn't allow my compression fractures (which cause that "pleasant" sciatica) to heal, so I had already been living with that when I had some moderate hip surgery and in 2 weeks, that wicked burning pain set in--BELOW my incision, I kept stressing to them, and I was kept told to ice it. It initially felt better, but kept seemed to get worse.
My one great forture though is my PM doc. He looked at what the so-called "pain clinic" at the hospital had put me on, kind of scoffed at it, and totally re-vamped it. Partly to do with the fact that I walked stiffly into his office, feeling horriby nauseous from the pain--asked his receptionist where the bathroom is, and she paused--then I said--"BUCKET---NOW!!!" and lost my lunch (previous day) in his wastebasket... He came out front, and said, "OK, this is not going to work--come back here with me," and his receptionist handed him the trash can and said, "I'M NOT cleaning THAT UP." HE did it...LOL I left the office after a fat shot for pain in my hip--carefully done, of course, with a tiny needle, but a LOT of medication; and THEY paid for my cab home since I had taken the bus. And prescriptions that would keep a few druggies happy for a long time.
But HE is the FIRST ONE I have ever, EVER been to who has listened to me--first lobby I threw up in, but I've had runs to many bathrooms--my first response to severely increased pain is to get sick. So this morning, I cut up some fruit, tossed in some soy milk and protein powder, and put it in a large juice container--cus it's about all I'm going to be able to eat/drink for a while. But it's nutritionally sound, and better than Ensure (cheaper too).
I know this is getting long, and I apologize, but I really haven't had a place to go w/o being criticized for taking the powerful medications I do (I also use stuff like 650mg aspirin TID, gabapentin, and carbamazepine, but I increase stuff like the gabapentin before ANY of the pain meds.
What makes me nuts is the people who GET THEMSELVES "incorrectly" DX'd with RSD and other conditions like it TO GET THE MEDS!!!! I have had people tell me that all they needed to take care of their RSD pain, and it gave them days of "O" and "1" days of pain when "proper" doses (of between 400-700mg of morphine, according to what they told me), so I have been kind of watching this forum before posting, if you'll forgive me.
I used to be an ER nurse, and it broke my heart; nearly crushed me; to give up my career when my back problems forced disability. But I was having hopes of returning to work, and getting off much of the pain meds.
But now I feel like RSD has stolen that from me. That's why I "hit the skids."
So anyone-comment away--whatever helps. I just had someone give me an exercise ball, etc.
Oh, btw, I have had severe arthritis in the knee of my affected leg, that has me sometimes DYING to ice it, but now I don't have to.....!!!!!! I've been using FLECTOR patches, an NSAID patch (not aspirin or tylenol, a REAL NSAID---go to
http://www.flectorpatch.com/What-Is-FLECTOR-Patch.cfm
Check the "Box warnings for contraindications (asthma & sulfa allergy, I have both, a MILD case of asthma, ONLY USE albuterol-quitting smoking helps-and a reaction to sulfa drugs, which I also have, so they dispensed only one box, and I hung out at the office for a couple hours after puttint tje first one on, and after they were reassured I was ok, I went home), but there's other cardiovascular warnings that come with NSAID use, bleeding, etc.). I have Blue Cross, and they are a Tier 4 drug, but I use 100% assistance, so I simply pay the brand copay.
But they have allowed me to have a LOT of relief on my knee pain, and I tell ya, it's a mess in there!!!
I will shut up now, sorry about the length
Hi Jenna,
Welcome. Please excuse my tardy response. You've come to the right place for support. I am so very sorry to hear about your IP and can relate .... my heart goes out to you.
The journey through Chronic Pain (CP) is at the very least a challenge. Just about the time we think we've got it..... something else seems to be thrown in our paths. Being flexible with inner strength is a must us. Knowing that Situational Depression often goes hand in hand with CP is also a must. It's important to understand what CP can do and often does to our psyche. We are not crazy and we certainly are not weak.
I think there is a lot to be said for young, new physicians. I sought the opinions of seasoned physicians for years.... no one had any answers. My regular PCP had just left my clinic where I had been a patient for only 18 months. I had just been released from the hospital for kidney stones and had to see a new PCP. As I was about to leave her office after the follow up she said, "Wait! You're still in pain. What's going on?" I almost fell over!! Where does that kind of insight, caring and observation come, especially from a brand new PCP? Tired of being labeled I'd had never said a word about my CP to anyone at the clinic, nor did they have my former records. She correctly diagnosed me on the very next visit. She literally saved my life. So that was a long story to tell you how much faith I now have in new physicians regardless of their age.
I too have a friend with RSD. I also was diagnosed with it but the DX was incorrect. Gladly I do not have RSD. I have watched my friend suffer with it for eight years following an injury from a skiing accident abroad.
I've had CP for almost 20 years and it has progressively gotten worse. I've learned so much during that time... and only wish I knew then what I know now. As an example, I had no idea that those of us with CP often go through the stages of grief and loss. It now explains so much. I believe when you understand what is happening, you are better equipped to handle it.
I am glad to learn that you have a "cocktail" of medications and treatments as I believe that to be the best approach to chronic pain. As a general rule, no one drug or one therapy successfully treats the many facets of CP. If you are having frequent nasty flares there may be a better "cocktail" for you. Trial and error is the only way to determine if that is correct... but it sounds like your good team will address that possibility.
In my opinion, Information is power. It's one of the reasons MH's Pain Management Forum is so beneficial to those of us with CP. Sharing of information, support and caring happens here every day. I hope you'll be active in our community. We get it.
Best Wishes,
~Tuck
Welcome. Please excuse my tardy response. You've come to the right place for support. I am so very sorry to hear about your IP and can relate .... my heart goes out to you.
The journey through Chronic Pain (CP) is at the very least a challenge. Just about the time we think we've got it..... something else seems to be thrown in our paths. Being flexible with inner strength is a must us. Knowing that Situational Depression often goes hand in hand with CP is also a must. It's important to understand what CP can do and often does to our psyche. We are not crazy and we certainly are not weak.
I think there is a lot to be said for young, new physicians. I sought the opinions of seasoned physicians for years.... no one had any answers. My regular PCP had just left my clinic where I had been a patient for only 18 months. I had just been released from the hospital for kidney stones and had to see a new PCP. As I was about to leave her office after the follow up she said, "Wait! You're still in pain. What's going on?" I almost fell over!! Where does that kind of insight, caring and observation come, especially from a brand new PCP? Tired of being labeled I'd had never said a word about my CP to anyone at the clinic, nor did they have my former records. She correctly diagnosed me on the very next visit. She literally saved my life. So that was a long story to tell you how much faith I now have in new physicians regardless of their age.
I too have a friend with RSD. I also was diagnosed with it but the DX was incorrect. Gladly I do not have RSD. I have watched my friend suffer with it for eight years following an injury from a skiing accident abroad.
I've had CP for almost 20 years and it has progressively gotten worse. I've learned so much during that time... and only wish I knew then what I know now. As an example, I had no idea that those of us with CP often go through the stages of grief and loss. It now explains so much. I believe when you understand what is happening, you are better equipped to handle it.
I am glad to learn that you have a "cocktail" of medications and treatments as I believe that to be the best approach to chronic pain. As a general rule, no one drug or one therapy successfully treats the many facets of CP. If you are having frequent nasty flares there may be a better "cocktail" for you. Trial and error is the only way to determine if that is correct... but it sounds like your good team will address that possibility.
In my opinion, Information is power. It's one of the reasons MH's Pain Management Forum is so beneficial to those of us with CP. Sharing of information, support and caring happens here every day. I hope you'll be active in our community. We get it.
Best Wishes,
~Tuck
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Setting boundaries is hard. My family does not understand, despite me trying hard to educate them. They are totally against medications. And they see how bad I am (I've been also having a really bad fibro flare-up.)
What kinds of procedures have you had? I had 5 stellate ganglion blocks that was supposed to block the sympathetic nerve and hopefully help the pain. I get mixed results and none help for long. I've also had 3 lidocaine infusions. Last week I had one and was amazed at how much it brought my pain down. I went in at around a 9 and came out at a 4. (Four on the pain scale, while unpleasant, is manageable for me.) Now they're talking to doing one every week to see if it will settle things down.
I am glad I've cut back on my medications. The pain is tough but I was on much too much. My guess is I will always have to take something and I hope I can find something that works better than what I've been doing. I am also having my second appointment with a pain psychologist tomorrow to look at alternative treatments. (Tuck, funny you mentioned grief; at my first appointment he asked if I had allowed myself to grieve the loss of the use of my hand, loss of my career, etc. I haven't. Maybe I can work on that :)
What RSD organization gives out those cards? I'd love to see a site that deals with RSD and see if I can learn anything new.
Sorry I don't have any suggestions for you (other than maybe the lidocaine.) It's a terrible thing to battle. (And Tuck is also right on the depression ... that's been a recent thing for me. I may have had it here or there before but the past few months have been really difficult and I find the depression is lasting a long time right now.)
This is a great forum, full of support!!! I hope you keep posting.