Chills...???
 

Hi Guys!! Hope you are having a lower pain night. I am finally starting to feel a little better. Still having issues, but the incisions have finally stopped oozing. Now for the allergic reactions to clear up...ugh!

So I mentioned in an earlier post that I was fearing that my RSD is spreading to the incision site in my right front/side (where the thoracic battery was located). Been getting some awful sharp, shooting, burning pains in that area the past two days. I have also been getting chills, but on the right - front/side (near ribs), arm, hip. It is really weird feeling. And no, I am not running a fever when this is happening.

Was wondering if anyone else has experienced that?

Thanks!
Nanc
:hug:

Yes both my arms do. Its a very odd feeling when there the only thing that's really cold and have chills! It usually happens when im flaring.

Thanks tos. And yes, it really is an odd feeling....

Remember this was major surgery. The burning sharp pain can be from nerves healing and trying to reconnect to each other. It might not be from spread. I'm having the same thing with my c section incision scar. It's been a month and I am still getting it.

Hi Nanc, I'm so sorry you are having all this pain on top of everything else you have been through. When I had my two surgeries on my stomach for my endometriosis, I had stabbing, cramping and burning pain to the site of the surgery that had the most problems. Then there were times that that site was stone cold, just like other parts of my body that I may have rsd. (That site was on my lower left side of my stomach). My endo dr told me that he thought the after three months of still having this pain that it might be something else like rsd spread and to see my pm dr. My pm dr said it's possible that it was rsd spread, but he said it could also be the two endo surgeries I had done in 2012. He said it may take up to a year to heal from them completely and for the pain to go away. Well, it's been over a year now and the pain is still there. My endo dr said it shouldn't be from my endo surgeries because my ultrasound showed after a year that I was endo free. (thank goodness for that at least). My pm dr said it is now possible that it is rsd spread, but my drs are never 100 percent sure because they say they don't know enough about rsd to confirm it. I feel that it is rsd spread because the pain is similar to my other rsd pains. The meds I take for my rsd help calm the pain in my stomach as well, or I wouldn't be able to stand it. I also use a heating pad to ease the pain. I don't mean to scare you. You may not have rsd spread and may just need more time to heal. It takes a long time to heal from major surgery, so give yourself that time by resting and not overdoing it. You may feel better in a few months. I will pray that you do. Take care my friend. Sincerely, Renee.

Thanks Allanira and Renee. Hopefully it is just the healing process. I just haven't experienced this pain or chills in the other three incision areas or when I had the SCS's implanted and revised. Guess I need to be a little more patient :rolleyes:

Hey Nanc,

I am sorry you are having such a rough time of it! Near the area of nerve damage that caused my CRPS II if I touch that area it will send an ice cold rush down that nerve path even though it feels as if the skin has been removed and someone is pouring alcohol or salt on it BURNING constantly. I really hope that is just your sensory nerves healing normally. One thing you might want to do right away is start desensitizing that area by touching and stroking it with a flat palm, soft cloth etc., this will help the nerves respond to good stimulation and can help reduce numbness that often occurs after surgery along the incision site. I remember my doctor telling me that spread should be treated as a new diagnosis and treated aggressively as soon as symptoms start. That is what I am doing with my arms and they haven't worsened as quickly as my opposite leg.

Sure hope you turn a positive corner soon!!

Thanks Tessa! There is no way I can start desensitizing that area right now. I touch it when I wash it and put bacitracin on it and that is it! That is enough to bring me to tears. You should see these incision sites...kinda nasty looking and a little raw. Ick! I had some nerve damage in my upper back/shoulder area when I had the SCS's implanted. It is a lot worse now :(

Glad your arms are responding and have not worsened!

Oh I am so sorry! I should have been more clear. I didn't mean on the incision itself that would not be good due to germs but, around it say out 2-3" from the actual incision and then go in larger circles away from the site if you can or when you can. I'm so sorry your pain is worse.. though it is hard, try and stay optimistic that this is healing pain.

Sending good vibes your way...

I am with you now, I understand. Brain is not functioning so well, lack of sleep :Yawn: Benadryl usually knocks me out, but it is not doing it now. Itching so much...ugh!

Yeah, I am hoping it is healing pain and maybe it is worse because of the allergic reaction!

I've had some chills on my left side around my ribs round to my back. Freaks me out because I've had some muscle spasms in my ribs/chest that feel very scary, and I'm afraid the chills will set it off. I hate getting dressed on a cold morning!!!

Really glad to hear your wound is behaving a bit better than it was. Take care of yourself.

Bram.

Hi Nanc. I hope you're feeling a little better today. I don't have CRPS II, but know that with CRPS I that surgery with rsd takes a long time to heal. (at least in my experience.)
And Hi Tessa, I wanted to thank you for bringing up drs wanting to treat spread aggressively. I thought that's what they wanted to do with spread too, and was surprised when the NP at my pm drs office said to wait until spring to talk about treating my rsd spread. I need to talk to my pm dr next month and ask him to treat is asap. If they don't want to I think I will be seeing a new pm dr asap. I sort of feel like they have given up on me since I've had rsd for over two years and don't qualify for a SCS anymore. I don't think that I'm going to make them much money anymore so they just don't seem to care as much. (maybe I'm wrong, but my gut is saying otherwise.) I'm also going to try to wean off the percs that they are giving me. They say I don't take a high enough dose to have it affect my organs, but I feel sick to my stomach when I take them anymore. They do help with the pain, but at what cost? It's just not worth the risk to me. I hope that new drug gets approved for RSD (Neurondrate (sp?) so that maybe we can all take it and get rid of RSD once and for all.
And Nanc, I'm sorry again for getting sidetracked. I wanted to tell you too that when I was healing from my surgical wounds, I felt like a ping pong ball with my drs. None of them could explain the prolonged pain I felt and would pass me on to the next dr until I finally had my pm dr and endo dr say that I probably had rsd spread. Also, that was around the time I got fibromyalgia too. My neurologist confirmed that. I hope that doesn't happen to you, but just be careful to tell all your drs every pain you feel and have them document it, so that you are sure they don't just push you off to the next dr to try to explain your pain. Take care my friends. My thoughts and prayers are with you all, in hopes that you all have a pain free as possible day today. With love, Renee.

Thanks for giving me a reason to chuckle this morning.. I loved your reason for editing "muppetry" not sure what that meant really but it did give me a chuckle since all I could envision was Beaker, Kermit & Gonzo dancing around. IDK.. why I thought that was funny, thanks!

Ditto for me Bram. I laughed at the Muppetry comment too. I don't know what that really means but it made me laugh. I thought of Kermit the Frog when I read it. You are so funny! Thanks for making me smile as well. Take care my friend.:)

Sorry to side track this thread, but I have that exact sensation on my original location. Of course I'm not glad for either of us, but when I try to explain this people look at me as if I've become just overly dramatic. It feels as if there's a new incision with tabasco sauce poured in. Thanks for the insight about spreading.

Nanc, are you keeping notes on your symptoms? Please remember your
Vit. C and maybe a heating pad on the site?

Hey Di! I am keeping notes for a change (trying to get better with that). I cannot take Vit C because of my interstitial cystitis (it irritates my bladder :(). Dr told me not to use heat on the incision sites because of the allergic reaction, heat will make the reaction worse. But maybe I can use heat after they heal up. My sister-in-law gave me a really cool heat pack for Christmas :)

Oh Nanc, I'm sorry I should have remembered that. Please forgive the "duh"
moment? And of course you're still very early from surgery for any heat.

Nanc, I love the idea of a really cool heat pack :D

Hope you're doing ok today x

Bram,

You like that huh Bram :D haha!

And thanks, I am doing ok. I finally slept this morning, so that helps. Was up again last night with the itching. I think the bacitracin is irritating me now...argh! But I can see that they are drying up even more, so that it good! Having a lot of discomfort in that front incision, still. I am impatient and need to listen to my body and continue to relax :rolleyes:

No need to apologize...I appreciate the concern and suggestions :hug:

Honestly Nanc, try the Manuka honey...it's very good at healing skin, and if that incision site is still giving you a lot of grief, it's worth a try.

Glad you managed to sleep a little :)

Bram.

Can you try using Caladryl around (lol... not on) your incision to help with the itching? Or see if you can take Hydroxyzine for the itching? That is what my doctor gives me for my medication & latex allergies and both work pretty well and the Hydroxyzine helps also with sleep. The caladryl is especially soothing if you get raised bumps with your rash like I do.. grrr so annoying! I feel bad for you and hope today is better.

Tessa

Thanks for the reminder about that honey Bram! I was going to look it up and forgot what I was doing...I swear my mind is so much worse right now :(

I didn't think about Caladryl, I think I have some and will try it AROUND the incisions...lol :) I am taking Benadryl but have not taken Hydroxyzine, I will ask about it. I do have raised red bumps.

Thanks again Tessa :hug:

OK, I am gonna attach pictures of two incisions. Both are where the batteries were removed (right front/side and left hip/butt). The other two are up my spine, so I cannot capture a picture of them :) The pictures really don't do them justice. They do look much better than they did and you can see that they are drying out today. If this grosses anyone out, I apologize.

for some reason it would only let me attach one picture to my post...here is the other one...
(they don't look like it in the pictures, but they are each about three inches long)

Ouch, that does look sore....no wonder you've been going mad from the itching and irritation!

It's obviously completely up to you what stuff you try to help with the soreness. The only reason I've been pushing the honey is that I know how troublesome many of the meds are for you, and I thought it was something you could try without upsetting the balance too much...:winky: Whichever way you play it, I just hope whatever it is works for you!

The second one is definitely closing better. Thanks so much for posting these, I had no idea how major the SCS was, I've only read about it, and seeing your pictures certainly makes me appreciate why it's often seen as a risky decision with CRPS. I'm glad it helped you so much for that time though, as you say, getting that extra couple of years was worth all the aggro!

Lol on the muppetry thing you guys :D In our house, saying "you muppet" is a friendly way of pointing out that someone has messed up, haha, and "muppetry" is the art of messing things up without malice a forethought, as the courts would say...:winky: "Classic muppetry" means it's something that person has done previously and is well known for.....like for instance when I was halfway through cooking a tea tonight, but had forgotten to take the sausages out of the freezer...so my poor husband had to go and get some more!!!! Bless. My youngest told me I was a muppet first of all....as in 'oh Mum, you are a muppet sometimes...' in a slightly pitying way :D

Take care everyone, and Nanc, I'm glad I'd finished my tea before I looked at your pics :p Hope you get some sleep tonight.

Bram.

I guess I am a muppet too LOL...thanks for sharing that. It made me smile too :D

I most certainly appreciate every tip and suggestion from all. I am definitely going to look it to it more, I just keep forgetting...so frustrating!

Glad you finished your tea before looking at the pics :cool: The other two incisions on my back look about like the second pic posted (the first one is in the front and is the worst). The top incision on my back has this square around it where the tape was and broke me out. They all look a lot better.

SCS's sure are major, it is invasive and most don't realize it. I had both cervical and thoracic ones implanted at the same time, the dr and rep thought I was crazy. I told them do it at the same time or not at all. I only took off a week and a half from work...stubborn and hard-headed I know. I am glad I got some benefit from them, but am happy they are gone now.

Thanks again Bram!
Nanc
:hug:

Side tracking a bit more.. sorry Nanc.

Az-Di, I totally understand that "look" I don't think most people can even fathom the types of pain we have.. even most doctors. One doctor whom I love actually understands it quite well and one day when I was expressing how much worse my deep bone pain was getting from the top of my femur to my foot - he said that "I could probably feel the blood moving through my bone marrow" that is how sensitive our nerves are. That made sense and shocked me to hear how much he understood what we/I are going through. He is also the doctor that recommended the Mexiletine which is helping some.

The look I have trouble the most with is when trying to explain to someone how the cold temperatures affect my pain.. they give you that look like "my joints hurt to when it is cold" .. the actual air hurts me like someone is holding two live wires in my legs like lightning bolts... then the "look" just like you said.. I don't understand why shingles get's so much attention on TV commercials and in magazines etc., I've had shingles and yes it hurts like heck (no offense to anyone) but seriously why can't they do a commercial for CRPS oh yeah because they can't fathom this type of pain! grrr.

Okay... I'm done thanks for the side-track Nanc. Thinking good thoughts for you tonight!

It's all about advertising dollars and selling their drugs. If they really do come out with a drug specifically for CRPS perhaps this is where I pitch a commercial for them.


Oh Nanc, I am so sorry that you are dealing with so much. I saw the pics and omg OOOOUUUUCCCHHHH! I wish I had something to offer you. A silly cyber hug is all I have :hug: I sure hope you find something that helps and that you feel better quick!

Thanks Vrae, I will take the cyber hug :)

I hope you are doing better :hug:

Hi guys! Just wanted to let you know that my incision sites are drying up...finally!! I am still fighting the itching and irritation, but they are getting better. Yesterday I ran out of the soap I was using and tried a different one (same kind, different scent). Yeah, that was a bright idea! You will never believe this, but I am allergic to it :eek: I know, such a shocker. I was taking my benadryl and itching so bad. This morning when I woke, I had a rash everywhere. Seriously??? More rashes and itching....yay! Called my dr and now I am taking some meds for this. I am so over this crap!!!

My left hand is hurting in places it never has before and my interstitial cystitis is flaring. The fun never ends...

Thanks for listening to my vent...:hug:

Oh Gosh Nanc, I am sorry!!!

Have you ever tried Dr. Bronner's soaps? They are the only ones I can use without sensitivity issues.

Glad the incisions are drying up and closing. Things are looking up a bit ;)

Hey Tessa! I used Dr Bronner's soaps for a long time. I used the bar soap, couldn't tolerate the liquid. I stopped using it because it causes this white film to build up in the shower drain and clogs it up...really wierd!

Yes, things are beginning to look up as far as the surgical part goes :) Did I tell you that my urogyno thinks I am having RSD spread...umm, down there? Been having major burning and shooting pains along the outside...not happy about that!

lol.. The white film is the reaction to chlorine and other chemicals added to the water supply. It is annoying but cleans up easily with CLR which we spray weekly in the shower basin.

Gosh, I am sorry that they think it is spreading to that area. I can totally sympathize with you on that and will be here if you have any specific questions.. my nerve damage and subsequent CRPS II originated with the Femoral and Illioinguinal nerves so I am intimately (no pun intended) familiar with this particular area being affected by this monster. TMI.. but just tinkling is excruciating painful - my heart goes out to you!!!

Another thought on the itching.. how about vinegar? I have applied using a spray bottle when my rash itched so badly.

Funny thing is that that white film only happens when I use Dr. Bronner's soap, doesn't appear any other time.

I think with all this other stuff going on, it is causing my IC to flare. With that, it hurts to tinkle too and when the IC flares, frequency and urgency does too. Then the possible RSD on the outside...well, it is just a treat! Glad I can talk to you about it, but sorry you have that pain!

You know, my sister said something about trying vinegar the other night and I totally forgot about it. Thank you for the reminder. I think I will try it now!!

Nanc,
 

NO one can blame you for venting. You have been thru so much and any more added issues seem unrelenting.

Prayin the worst is almost over. Thanks so much for sharing.:hug:


Gerry

I hope the vinegar works!! Just keep trying things something has got to work.. I think and hope anyways.

lol.. one bonus is no more worrying about the bikini line in that area as the hair fell out within days of waking from surgery..hahahhahha sorry TMI but it is quite funny really. That is why I depend on the lidoderm patches and the SCS if I didn't have both then just the sensitivity to touch alone (never mind all the other symtoms in that area) would crumple me. Really tough on intimacy... that's a whole other topic ugh.. seriously it sucks. All of it does but honestly this one adds a whole new level to misery.

hang in Nanc, you are such a strong person!!

Gotta try stuff to find out if it will work. Since everything bothers me, I only put the vinegar on a few spots. My sis told me to try apple cider vinegar...it stinks!

Well, if we are gonna have this wretched disease we deserve a bonus here and there...like hair falling out in certain areas :rolleyes: But, the hair on my face is growing more and more...nice huh? Thank God my husband is sooooo understanding, intimacy...yeah, that is a whole separate topic there. And it does suck!

Thanks again for the positive reinforcement and tips :hug: