Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-19-2016, 10:12 PM #11
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Default ER if you are worried

I just don't know enough to comment other than if you don't have sufficient meds at home to deal with the pain and your temp and symptoms have increased over a set period of time a visit to your local ER might be necessary.
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Old 04-20-2016, 01:12 AM #12
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I feel pretty late to the conversation...but when I had a lumbar sympathetic block I got the temp changes and color changes...but it was NOT uncomfortable. The extra pain you are experiencing does not seem normal and if you dr won't see you immediately then I personally would go to the ER...just to make sure it's nothing serious and hopefully get your pain addressed.

I also don't really care for your doctor's response. There are MANY reasons a patient might not get relief from a block...it doesn't automatically mean you don't have CRPS. There are NO tests or procedures that can give you that answer. If there were...it would make every one of our lives easier. The criteria for diagnosing CRPS does not include any certain response to blocks...and for good reason.

Just a couple of things I would say off the top of my head that could result in the block not working...1) it wasn't in the exact right spot, 2) it was not an effective mix of meds for YOU to get relief, and 3) your pain may have changed from sympathetically maintained pain to sympathetically independent pain (at which point the blocks will not help). I know there are other reasons...but as time goes on the blocks are less likely to be effective. Also...some people say results are cumulative (though if you have a bad reaction I would seriously consider whether you want a second and if you do if you want it with this particular dr).

I hope your pain passes quickly and that you get some relief. Take care and keep us posted.
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Old 04-20-2016, 11:12 AM #13
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Dear Jenn,

I am in the USA and I know there is a big time difference from you, but I don't know the amount. Sorry if this is reaching you at an inappropriate time but here goes. I thought about you all during MY night and hope you are making it through your night without too much more agony.

I hope we hear from you as soon as possible today. We are concerned for you.
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Old 04-20-2016, 10:40 PM #14
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Hi Jenn,

It has been around 24 hours since we last heard from you. I sure hope you got some relief and are doing better. AND, also have some answers.

I am on pins and needles (no pun intended) waiting to hear how you are doing. Please let us hear from you as soon as you are able to post.
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Old 04-21-2016, 04:29 PM #15
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Dear Jenn,

I am hoping this is one of those times when NO news is good news, since we have not heard from you.

I would love to think that you are no longer suffering any after effects from your injection and all has been resolved.

My fear is that you have possibly been hospitalized and are not in a position to let us know of your condition at this time.

We are concerned and hope to hear from you. Sending good wishes your way.
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Old 04-24-2016, 03:04 AM #16
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Default I'm sorry to make everyone worried..but this week has been VERY difficult to respond.

Hello everyone,

It's Saturday the 23rd @ 9:45pm. I'm in the US as well Hopeless (I'm in Hawaii) and I'm very sorry for making you worried. As you can imagine, this week has been hell on me physically and mentally. And I have been trying my hardest to get the rest I needed. I did have my meds to help me, but I truly believe out of all the medications I take, the Prednisone is the ONLY one that has actually done any good. It's helped a bit with the swelling in the thighs and shins/calves but not so much with the knee and foot. The redness and warmth haven't gone away either but it is at a much lower tone in color. My pain meds have no lasting effect on the actual pain so I have been suffering a lot. Mostly I've been just trying to sleep it off but we all know that doesn't work either. I can't get into a comfortable position and the tremors and spasms are still occurring. I've spiked a fever it keeps going up to 101.2 and then staying at 99.8. I literally feel like crap or like I've been plummeted by a tractor trailer or something. Even though at the urging of my husband I did not go to the ER. Why? Because to me it's a waste of time every time I go there. They don't do anything for me anyway and to even get up from bed which is a huge task in itself to go there was too much for my body and brain to wrap around. So....I've been here at home trying my best to do what I need to. My hubby works a lot so my momma's been here to help me get up to go to the restroom and fix me something to eat. Towards the end of this week I can actually walk somewhat or more like drag my legs using my walker but both of my legs are VERY unstable at the moment. So it's a bit scary at times. I also did not make a "follow" up appointment with my pain doc like he said I should because duh I can't drive. I'm just gonna wait till I have my normal appointment with him which is soon to talk about everything because I'm still mad. I don't get how he said I probably don't have CRPS when I've supposedly have had it for the past 10 years and I know for a fact that those injections work best within a year from diagnosis. Just FYI I will never get another injection EVER! As of now, I'm doing alright I suppose....as good as can be expected I guess. I just wanted to respond so y'all don't worry and I will write more when I am able. Thank you all for your concern, it is truly appreciated!!!

Gentle hugs to everyone!!! And hope y'all have a great night.

Jenn
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Old 04-24-2016, 06:58 AM #17
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Thank you for checking in, I only wish you had better news to report.
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Old 04-24-2016, 07:34 AM #18
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Hi Jenn,

First, let this dummy say, sorry I did not say "continental" US. I did NOT mean to imply that Hawaii was not a part of the USA. OOPS !!! I just meant there is a really BIG pond of water between us (North American continent) and a lot of time difference on the clock. You will have to forgive me. My brain doesn't always engage as my fingers tap on the keyboard. I didn't even realize what I said until I read your post. I had to laugh at the stupidity in the way I had written that in my post. Honestly, I DO know that Hawaii is one of our 50 states. (A little embarrassed, too.)

OK, now that I got that out of the way. ................

Thanks so much for writing to us. We were very concerned about you and hearing from you was great. I am very sorry to learn how much you are still suffering and that some of the post-injection matters have not resolved.

I know the conflict when one feels bad enough to need medical attention, yet, feels too bad, to GO to get the medical attention needed. I had that happen just two weeks ago personally. I woke with NEW pain on a Sunday morning. When it persisted, I called my PM doctor on Monday but he was totally booked. On Tuesday, I called my primary care doctor and I know all I had to do was ASK to be seen THAT day and it would be arranged, but I hurt too bad to even think about going in the same day as my call. I did not go in until the next day, on Wednesday, by MY choice.

I understand that you have pain and transportation issues for getting to a doctor, but I do not think your temperature rises should be ignored. I really think you need to be seen and evaluated. You may have other things going on beside your CRPS that needs attention.

We would love to hear from you and know how you are doing when you feel up to it.

Wishing you better days, and better care. Thanks again for posting.
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Old 04-24-2016, 11:05 AM #19
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My concern is the fevers. That is an indicator of infection. And you did have an invasive procedure done. The redness and temperature could indicate a post procedure infection, which would best be evaluated ASAP.
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Old 04-24-2016, 02:59 PM #20
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Good Morning.....

Just saw ya'lls post and honestly I am a bit freaked out about the fevers. But I am making it to my PCP tomorrow because i WILL NOT go to my pm doc. My PCP is in the same town as me and although I live on an island lol my PM doc is about a 45 minute drive to get to. The injection site on my back still fricken hurts and I checked my knee and foot when I got up this morning and it seems to have mellowed down in color. As for the pain though, that has not subsided. I really really do not want to go to the ER. But what are your suggestions? I woke up with a low grade fever just now of 99.6. I just don't want to waste my time there because a lot of ER docs have no idea what CRPS is and what it does to the body. Idk what to do at this point because I do have littles and I don't wanna have to drag them all to the ER with me. Should I just wait to see my PCP in the morning tomorrow or go to the ER sometime today? I'll keep checking my temp and post periodically during the day. But first I think I need some breakfast.


Thanks again y'all LMK what y'all think please.....

Jenn
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