Hello everyone my name is Heidi, I am a 30 yr old female from Houston, TX. Tonight, is my first time on Neuro Talk website. I was referred from a gal off a MySpace.com website. She told me this website is wonderful, that many ppl are very friendly on here, open theirselves up and talk about anything! Like a family to be exact is what she said...That is what I am looking for! Let me begin by saying that I was diagnosed with RSD in my left lower leg/foot the end of Aug of this yr. July 22, 06 I had an incident where I stood up out of bed, I had this horrific pain shoot from my lower back, to my hip and down my leg! Takes alot to get me to shed a tear, this sure did the trick, in fact I cried like a baby! Make along story short my b/f took me to the ER where they did a MRI scan and said I had a ruptured disc in my L5-S1, and was expierencing severe siatica. I knew that I had a herniated disc in that area for about 4 yrs prior to this incident...Me bad, should have had it taken care of, but I can be stubborn...I would have a siatica flare up here and there..But, nothing some ibuprofen, couple days off from work, and a couple chiopractor appts wouldnt do the trick to make me feel better! I was referred to a top notch Neuro Surgeon, this man is wonderful! I had a lumbar laminectomy for the L5-S1 on Aug 24, 06. Before I was able to see this Dr I went to a chiopractor a few times for some adjustments, she really didnt even want to touch me because I was so swollen in my back and sore...I had a hard time walking and putting weight on my left leg/foot, the foot was swollen, started changing colors, started burning/stinging, muscle spasms...Everyone knows what Im talking about if you have RSD...Thing is I didnt nor did the Drs know at the time before my surgery that is what I had, told I had siatica..The day of my surgery the Dr came in to talk to us about the procedure and examine me one more time...He seen my foot and thought I had a blood clot, did an stat doppler, but that came back negative so the surgery went on...He found 3 ruptured discs and some bone spurs..The surgery was a success though..My back was a little stiff but, didnt hurt much...It was my leg/foot giving me all the problems and pain...4 days after my surgery my foot wasnt getting any better at all, so I called my Dr, he seen me right away the next day...Admitted me to the hospital immediatly after seeing him, thought I might have cellulitis..I was put on a antibiotic and given pain meds...I seen 3 different Drs within the first 2 hrs i was admitted...All the Drs were arguing about possible different diagnoses...In fact even my Neuro Surgeon was!! Along comes this nice lady, a internal medicine Dr..She said straight out to me, "you dont have cellulitis or siatica, I believe you have a rare disorder called RSD, I myself cannot diagnose you, but I know someone that can"..She referred me to a Neuro Pain Medicine Dr, he came in to talk to me, and examined me...I was for sure diagnosed with RSD..I had never heard of this disorder untill he told me about it..He put me on iv steriods, neurontin, lidocane/ketamine compound gel, and pain medication, I was in the hospital for about 7 days..Upon discharge he ordered continue steriods for 5 days, neurontin 300 mg every 6 hrs, physical therapy which includes Fluidotherapy 3 times a wk, and pain medication as needed...I have been feeling so much better since Aug, in fact I did like a 180...Able to walk with full pressure on my leg/foot, swelling went down, burning/stinging subsided, overall I was feeling great! Yeah sure, Id have my days with soreness ect but nothing like I was feeling before and while I was in the hospital! Dr told me that he believed that since the RSD was diagnosed so early that I have a very good chance of going into remission with this! I have been suffering from insomnia have such a hard time sleeping at night its crazy, and mood swings...I get depressed here and there, more so than I ever did in my 30 yrs of life, before my diagnoses...But, Im told this is normal for RSD patients...Anyhow, on Thursday out of no where I started getting kind of a slight burning shockish type sensation in my left wrist/lower arm (below the elbow)..It wasnt anything horrible, very tolerable, but at the same time uncomfortable...It would come and go for about 15 mins...Then it went away..Saturday it happened again, same symptoms, same area...Lasted about the same amount of time, give or take a few mins...I massaged the area, and that seemed to help it give...Sunday night when I was finally able to get to bed and try to sleep, my body felt like it was going haywire!! I had the burning/stinging/shock like sensations all over!! From the back of my neck, shoulder, cheek, right leg/foot, right arm/wrist, middle of my back..Felt like a pinball machine, if that makes any sense?!? The pain subsided after about 15-20 mins...Today (Monday) Ive been alright for the most part, yeah pain here on differnet limbs of my body, kind of like Sunday night, but not as intense!!! So is this something I should be concerned about? What do you all think? Could it possibly be spreading? If so, can it spread that fast, and to so many different places of the body? I am taking my Nerurontin as prescribed and going to my therapy appts as I should....I am new at this RSD, I have done alot of reading on so many different websites, and have talked to ppl with RSD..I still am full of tons of questions ect...I called my Dr today..Orginally, I wasnt suppose to be seen again untill Dec 8, but he is seeing me next Mon instead...I seen him beginning of Oct, and at that time I was doing good, and he was very impressed with how I was doing...Please anyone out there that can help me shed some light on my concerns, Id appreciate any comments back!!! I hate to stress about this, because I know remaining postive is the key with RSD...Just hard not to, and I know for sure that the stress isnt helping my flare ups any at all....Thanks for your time everyone! I look forward to talking with ppl!!!

Heidi Hi!

Just wanted to welcome you to the board, sounds like you've certainly fetched up in the right place - your friend is right, this is a wonderful place, I hope we can be some help. I've had RSD in my left hand/wrist for 2 years after breaking my wrist, and they suspect spread to the right arm now, but I don't know what's going on yet. I'll let the others tell you more, we have some members who have suffered with this monster for many years, and lots with RSD in the legs.

I just wanted to say hi, welcome, make yourself comfortable, settle in ....
all the best.

Heidi,

It's got to be frustrating to think that you are doing well, and this thing spreads. I don't have RSD, but my mother got it after she had a bad fracture in her right wrist from falling on black ice. My mother has always been healthy, like you, she's didn't cry over small things. But I was there through the whole thing, so I can see how someone who's so very active can have a really hard time of it.

It really sounds like you are getting some good care. Plus, you were diagnosed in a timely manner. Someone who was getting therapy the same time as my mom had been suffering with it for three to four months, and had become very debilitated without treatment.

I'm not a doctor, but I would guess that this spread like it did because the damage was originally in your back. Of course, all of the nerves are connected there. RSD can spread quite quickly, but your recovery can be quick too. The number one thing is that you take action, literally.

My mom didn't originally take Neurontin, but when she did, she found that she felt better because she was sleeping better. She couldn't sleep due to the pain, and the burning/shocking sensation you are talking about. Are you taking Neurontin before you go to bed? Maybe it needs to be adjusted.

The other thing that gives her relief is a non-electric heathing pad that has corn in it (some have rice or other grains) and she sprays it with water and warms it in the microwave. She couldn't believe that something that is warm helps to soothe a burning sensation, but it works.

If you are stressed out, I'm sure that you know stress does add to how well you feel with this. I saw my mom start to get depressed and stressed as well. She's a type A personality, so being depressed was not in her nature. She started to feel better when she concentrated on her therapy and by seeing that she was getting better. Keeping busy was the key, so she didn't have to think about how her wrist and hand felt all the time.

As for the swelling, even though it didn't make sense, she found that moving her hand, wrist, and arm, helped to reduce it. Massage also helps, as you related. But her recovery has been frustrating and painful, and she's had problems with her shoulder. Like you, she feared that it was spreading. So she kept moving it, and it's nearly cleared up.

It sounds like your therapy went well, so talk with your physical therapists. Depending upon how the therapy area is set up, I would suggest talking with other patients, if you haven't already. My mom found that feedback from others was really helpful, even if they didn't have RSD. And once she started feeling better, she was the one offering advice.

I know that I can't truly relate to your experience with RSD, but I'm hoping that I can related the sucesses my mom has seen. As for the pain and frustration, I can relate. I have a VERY rare blood disorder that most doctors have NO clue about, and it's no fun to be in pain and the doctors can't seem to figure out what's going on. I have the kind of pain that only morphine can douse, and it doesn't take it away, it only makes it tolerable.

Anways, it sounds like you just hit a speed bump on the way to recovery. Remember that you got better because you worked hard at it. My mom's bone doctor said that it's ironic that RSD tends to happen in type A personalities, but it's type A personalities that tend to heal the best because of their drive. And it sounds like you are goal oriented and driven, so use it, so you don't lose it.

Wishing you all the best!

Purple Pal

---warm wishes from the cold state of Wisconsin---

Hi Hon...I wouldn't contribute the zapping to spread just yet. I get the zings and the muscle spasms (which go away with massage) like you do as well. Sometims it's caused by the RSD, sometimes by RLS (which I have in my whole body as a result of the RSD) and sometimes it can be a side effect of medication. Now, I like the site called askapatient.com and I just went there and looked up neurontin and LACK OF ABILITY TO SLEEP is one of the side effects that many people have with neurontin.

I went to the website for you, and have copied and pasted below some of the things that people posted that "sounded" kind of like what you are experiencing. You may want to go there yourself and review what other people have said. NOW...this is a "wonder drug" for some people with RSD. I do NOT want to sway anyone AWAY from neurontin. Some people respond differently to different medications, and some people are better able to handle the side effects differently than others. I myself was on neurontin, and chose to PERSONALLY go off of it cuz i didn't liek the side effects. Some people don't mind them, or they aren't as bad, or are different, and they get great relief from the neurontin. So if anyone is reading this, and your doctor wants to try you on neuronting, please do NOT say no, just because you are reading this. If you go to askapatient.com there are also a ton of people that neurontin has HELPED. It reacts differently for different people, so please, do not read this and take it as neurontin not helping you.

for the OP, please read below and keep in mind it could very well be that the neurontin is having this affect on you. Just because it's not listed as a side effect on the pharmacy insert doesn't mean it's not a side effeect. That's why I like this site. It's REAL PEOPLE talking about how the medication affected them, rather than a drug company. So without chattering on and one...here is the copy/paste:

I couldn't believe this when I read it here...but, someone who gave this a "1" rating said the bottoms of their feet hurt! The bottoms of my feet hurt, too. And it started the a few days after I started the medicine; I thought it was my shoes, but my feet have been hurting for 2 months straight and it's not my shoes; I would have never linked it to neurontin.


mild vibration sensation in my body/head.

muscle pain, find myself clenching my fists,

severe pain in back of neck, migraine like symptoms, shoulder ache

muscle weakness etc.

Profuse sweating and discomfort if Not taken every 8 hours.

severe hand tremors.

edgy and nervous inside. I have this feeling that I'm crawling in my own skin and want to get out!

slight wooziness & prickly feeling,

tingling in leg,

Terrible pain in the joints of all my fingers, terrible pain in my knees, and also in all of my toes.

increased joint and muscle pain, bottoms of my feet are killing me since I started taking it, Have had RSD for 1 1/2 years and see no difference in pain in arm but extreme pain in places I never had it before

The drug brought on skin pain-- like open sores.

Also found I had increased body aches

pain in feet,

Pain escalated severely. Added pain where there was none before Neurontin. Confusion. All kinds of mental/mood/sleep problems that were NON EXISTANT prior to taking.

ntensified the burning in my arm and hand..and now have major pain in other arm and hands

worsening of neuropathy by a factor of 100 if i miss a dose

Caused distal weakness (hands, wrists, feet, ankles become inanimate and curl up like a quadrapalegic),

Heidi,

Nice to meet you. Welcome to the forum, it is a wonderful place.
Lots of ppl to talk with you, answer ?'s.

Lisa, weird, I have those same symptoms without taking neurontin !!
Except that lady didn't have them before taking neurontin.
I had to go off it years ago.

I could never massage the sites where I have RSD. One thing popped up in my mind:
There was no mention of blocks here. What about blocks?
One should have been done before the surgery, except they didn't know you had rsd then. I'd mention stellate ganglion blocks to my doc asap for where you know you have rsd.

One last thing...RSD can affect the whole body, but what is happening to your body is not always RSD.
Otherwise (I think) RSD can cause discomfort in areas you don't have rsd. Maybe it is pain or stress, or messed up autonomic nervous system, but if it is not intolerable burning pain, it might not be rsd, as that is the one sure sign.

Nice to meet you
Hope

Yes no mention of blocks here, because I havent had any!! My RSD was caught extremely EARLY...Within a month and a few days of having it!! I have been on Neurontin since then..My Dr says with proper medication and aggressive physical therapy that I wil head into remission...Blocks are an option if this doesnt work for me, we have discussed this...He wants to try other things before giving me the blocks, to him that is a later resort!! Every Dr has their own treatment plan for every individual...As far as me being able to massage the sites, I was only able to massage my left lower wrist/arm area, when I was having some minor burning/stinging/shock type sensations in that area..I do not have RSD in that area, I was diagnosed with the RSD in my left lower leg/foot...Where I massaged the area I believe I might be having it spread, but thats not where it orginates from...If I was to even try and attempt to massage my left lower leg/foot Id scream like a little kid, there is no way Id be able to do it!! I was just writing asking if RSD can spread and how fast...The places in my body where Ive been having burning/stinging/shock type sensations have been yes been tolerable, but still hurt..I never had these sensations EVER before I was diagnosed with RSD...So either the RSD is spreading or I agree it could be stress, but having the same type symptoms all over my body and its been continuous every day since then??? Hmmmm...

Heidi,

Glad you found us and welcome to the family (although we wish it was on other circumstances).!!!

I have RSD for the past 4 years now in my Right foot/ankle and has moved up my leg and into my lower back adn to the thigh of the "good" leg. So yes mine has spread and I worry about every little ache or twinge or pain that i have , in worries that it could be RSD moving agian. I had an ache adn pain sooo bad in my wrist a couple weeks ago that i thought for sure was it moving to my hands, and i got all worked up thinking how i could handle it not only messing with my feet , and now my hands!! I then just put it out of my mind thinking that if i use it , then it wont set in and if i move it maybe it will go away nad i might have twisted it just right. Which i guess i did because in about 4 days it was gone and normal. But the more i think about it now, i know that i had begingins of carpal tunnel syndrome so i could have flared that up too!!

Im not sure who said this but I wouldnt be worried just yet of it spreading or that this could be. RSD effects the whole body and gives us wierd twinges at any given time andjust lets us know that we are still there and that you cant ignore this!!

I am on Neurontin and i dont have much side effects at all!! im actually maxed out and take 3200mg of it a day( 800mg 4 times a day) and also take morphine and lortab and baclofen. All with out much side effects, the worst is the nausea from the morpine.

has your doc said anything about doing blocks?? That was the first thing i had done when i was diagnosed!!! well was given meds first and then next day was the first block!! Expecilly since you are so early in your diagnosis adn have gotten good results from meds alone , you might wnat to ask about blocks because this can kick you into remission even faster!!!

I also have a blown disc in the same spot and am stubborn too, I have put mine off so long that it has become calcified and almost looks like it shold be part of my sacral bone!! Im not gonna have that touched till i absob. have to!!

Keep in touch and if you have questions, ask away!! i wish i found this site when i was diagnosed!! i didnt find this till i was a year or 2 into this !!

Good luck

Amber

You asked if RSD can spread fast. My half sister had RSD, and as I understand ( we were not close enough for me to know with my own eyes, so my info is 2nd hand ) her RSD went from nothing to full body in just a few months.

The first time I had it, in 2001, it was in my right foot, and it stayed there until it gradually went into remission over 4 years.

In summer of 2005, it started in my left shoulder after it was twisted - it is worse this time. It was localized for a few months, then was back in my right foot where it was in 2001, then once moved to the right shoulder, and now it has started down my back, it seems to be moving pretty fast to me - a few inches a week. It's also made an appearance in my good foot in a small area. So, I am in all four quadrants now, in 14 months from the date of injury with my 2nd round of RSD.
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Everything I have read or heard from any doctor is do blocks RIGHT away. I understand every doctor has his own method, but you won't be able to do this over again. You may want to get a second opinion on this. I had two blocks within a month or 6 weeks of my 2nd round of RSD - but they didn't help my pain so we didn't continue. Blocks are not that big of a deal. I don't understand why he would not want to do them now. You can't go back to the beginnning again later on.
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Neurontin was no good for me either - I couldn't think correctly, gained 40 lbs in just a few months, had eye pain, muscle pain, so many side effects and no pain relief .... I switched to topomax with no side effects and quite a bit of pain control. But, like Lisa said, that's no reason to not try it or continue it. I just could not take it - for me it was a terrible med. Same with Cymbalta. The side effects, even after 4-5 months of trying it were just awful. It didn't help my pain either. No matter what the books say. But topomax is my life saver. Everyone is different. None of the info on the big websites mention topomax and I don't understand why. I'm glad that my pain doc and neuro know about it!!
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One thing that sticks out in your post to me is "Dr says with proper medication and aggressive physical therapy that I wil head into remission"
I would be careful with "aggresive physical therapy"... believe me, I know! Aggresive therapy really set me back and I am conviced caused spread. I was getting worse, and we didn't know why. It was my friends on the old BT board who are now here that taught me it was this aggressive therapy that was probably the cause! Others had become worse after aggressive therapy. Now, this is my understanding of why - explained to me by my new Occupational therapist - who has really helped me!! My first therapist who was making me worse, having me stretch to far to quick - pushing to hard for RSD - encouraging me to go "past the pain - stretch further or you won't get better!" - like you would for any other type of injury or for regular exercise. He WANTED to help! But, he was treating me like all his other Occupational therapy patients! Not an RSD patient. Pushing to hard aggrevates RSD. The new therapist, who works where there is a world re-known Dr. in RSD so she treats RSD patients nearly all day every day - it is her specialty - she has a ton of experience with RSD people (this is CRITICAL for good therapy - your therapist must have experience - successful experience! - with RSD people!!) Anyway, she says that if you push till it hurts - you are only going to go backwards. That aggressive therapy is not the way to go. Slow and steady wins the race with RSD. She started me very slowly, and has very, very gradually increased what I do, and I have regained most of my strength, and a lot of my movement. Before, with the other guy, I very nearly passed out with pain during the sessions. With the new therapist, if I wince hard, she's making me pull back to a more comfortable spot and start again. Gradual, even smooth moves. I went back to the first place, to show him my improvement. He never thought I could do what I have done. I talked to him about how we accomplished what we have. He was very surprised, and has contacted my new therapist to discuss how she has helped me. He had no idea what he was doing would actually make me worse. He had been taught the old no pain no gain and could not get past that. Now he knows better. With RSD, it's no pain is all gain. You have to learn where the line is. You have to stretch, but you can't go to far or you go backwards. Each day you have to try to go just a tad bit farther - but not to far.

I travel just over 3 hours one way to go to a therapy session. It means that much to me to go to someone who KNOWS what they are doing because I know how much my RSD spread when it was aggravated by the stress and pain when I was in the hands of someone who pushed to hard.
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purple pal said:"Remember that you got better because you worked hard at it" and "My mom's bone doctor said that it's ironic that RSD tends to happen in type A personalities, but it's type A personalities that tend to heal the best because of their drive."

I don't agree with this. I think that RSD is different with everyone. There are cases where no matter how hard you work, or what doctors you see, or what meds you take, or what surgery you have, you are still going to have RSD, and it is going to do to you what ever it wants. Period. How hard you work has nothing to do with it. Sure if you are in PT or OT, and you are ABLE to stand the awful pain of a simple stretch, you might be one of the lucky few who gets their use of their limb back. But I don't think that means you will have some sort of remission. I have worked really hard in OT for a year now. Nearly 3 hours a day I work at my therapy exercises. I do relaxation and chronic pain meditation. I go for deep tissue massages every week to keep the sensitivity to touch at bay. I am on the right medications. Even though my strength is better than it was after my initial shoulder injury that caused this re-occurance of RSD in summer of 2005, my pain is pretty much the same. I don't know how I could have worked harder. People would put me in the Type A slot.

With a typical broken leg you can have surgery and a few pins and do some leg lifts and work hard at your stretches and you are all better. You can work your behind off at getting better at RSD and still get worse.

Sorry to rant a bit. I think that's where you have to walk in our shoes to understand the actual frustration.

purple pal...your mother is very lucky to have been one of the ones who did get better. I went into remission once too. I didn't work nearly as hard then as I am now. This time.... no matter how hard I work, I will not be so lucky - it is clear to me that RSD is here to stay this time. Perhaps your mother is only a fall or a twisted ankle away from having it again, and next time, perhaps no matter how hard she works, or what medication she takes, or what doctor she sees, it won't go away. I think that is the nature of the disease. You draw the right straw - you get lucky. You don't - you don't.

However --- you can do everything possible to get better that you can.... get those blocks right away. Find the best therapists and doctors who KNOW about RSD... and then do your OT or PT. Get the best medications you can. Eat the best healthiest diet you can. Get the most sleep, and have the least stress in your life. Enjoy everything you can in your life. Find something you enjoy and DO it. Do chronic pain meditation - it eases the stress and tension. Take anti-oxidents, vitamens - everything you can that you think will help. But, understand that RSD may still do what it will, and don't feel guilty about it. At least that's what I have done, and how I have been able to deal with it. Knowing I am doing all I can - but that's all I can do. I can live with that. From there, it's out of my control.
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Heidi, if you continue to have those zap feelings, you might try zanaflex or baclofen... I couldn't take zanaflex, but baclofen has really helped me. I used to get them so bad - They would bring me to my knees! I couldn't sleep, I would lay twitching. It felt like I was being shocked with a cattle prod or I had walked into an electric fence. I used to live on a farm - I know what that feels like! First you get a zap then your muscles just start twitching uncontrollably. I think the chronic pain meditation helped me a lot with this too. I used a book/cd combination called Break Through Pain. The book helped me more than the cd, but somehow it made me less afraid of the pain, and helped me deal with the zaps and shock-like pains.

Do they have you on an antidepressant? The doctors are big on Cymbalta right now, but good old trazodone is the only one I have been able to take so far. (I have a lot of problems with many meds - can't take a lot of them ) It's listed on a lot of the websites and RSD info. Supposed to help with sleep and pain. I have not been on it very long, am not at full strength yet, so not sure yet if it's going to help with the pain, but it is supposed to. Even at half strength it has helped with the sleep. Was less than $5 too -- not even enough to make a co-pay! Before that, I was getting 3 hours on a good night. Now, am up to 4-1/2 to 5 hours . Downside is, I can't take it and the baclofen, so had to cut down on the baclofen late in the day and at night.

remember...... I'm not a doctor, and this is only my experience with these medications and therapists.. your experience may be totally different. RSD is very individual... and though these things did or didn't work for me does not mean that they may or may not work for you. The aggressive physical therapy may be just what you need.... but, I would hope that your therapist has successfully treated MANY people with RSD in the past. When I asked my first therapist if he had treated RSD, he said yes... only to find out later, he had treated it twice, and both people got worse......

Hope this helps!! And, welcome to the board, but sorry you have to be here. You've found the best place!

Jules

First, I would like to start off ans say "Thank You" to everyone on here that has welcomed me here, its a great feeling! Also, another "Thank You" for those that have taken their time to post a reply to my topic!! Any replies with suggestions ect I appreciate very, very much!! I mean im VERY new with RSD...So Im full of questions, ect!!

RSD_Angel, Yes I am sure that I am stressed out and putting my body into thinking stuff, if that makes sense?!? Gosh knows stress isnt good for sure with RSD...I mean Ive been concerned about every little twitch, spasm, burning, sting, shock, ect...Who wouldnt be though, if you arent used to it? I need to grow used to that, and eventually I will!

I go to see my Dr next wk Mon, he is concerned and wants to see me...Orginally, I wasnt suppose to go back till Dec 8th...I am for sure going to mention the blocks..He mentioned those with my very first and second appt with him, but said he wanted to take a different rd first with Neurontin and aggressive physical therapy first which includes Fluidotherpay...Still going to mention it to him though...Seriously I have posted my concerns about the RSD Possibly Spreading on more than 1 msg board, and I have had a few ppl to be honest mention blocks and why havent I been started or had one yet? So yes, something I will definetely bring up to him!! Thank for your input !!

To all the others out there and anyone else who may read this, any more suggestions or anything else I should bring up to my Dr please feel free to leave a msg..Im still concerned about these "feelings" I have been getting through out my body...Today hasnt been to bad, have had a burning/sting here and there...

Thanks Again everyone you all rock!!

Can't type much because RSD has wrecked my hands buty first WELCOME and second, RSD can spread fast for a while than slow down and stop and than speed up again. It really is individual to each persons body makeup. For instance - your immune system, how long you had it before it was fiagnosed, what activies you continue to do that might keep aggravating it and so forth. I hope this helps as well. Chin Up!

Mark