Survivor Monday!

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Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/25/2012 11:50 AM (GMT -6)   
 
 
         Hey CP Family!...Tina is out with computer problems, shakehead .... but we wanted to make sure you all had the opportunity to post here on Survivor Monday!

 Check in when you can and let us know how you are doing.... how you "survived" the weekend.... and what your plans are for the week ahead.
 
       Take care!...and Enjoy!
 
      SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/25/2012 4:16 PM (GMT -6)   
Thanks Michael - I appreciate you posting!

Yep, main computer down... so time will be limited while getting it fixed to when I can steal one of the kid's laptops, etc. Hopefully it will just be a day or two.

Struggling w/ a very big increase in pain right now... just been doing WAY too much - but really have no choice right at the moment.

I need a medication increase big time - and I'm really thinking I'm going to find a new PM. It may be one of her partners... I don't know. But I can't be miserable because she's more "conservative" than my last doctor. I will give it one more chance w/ her and that's it.

Anyway, take care all... have a good week... I'll be around as I can. --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 6/25/2012 4:47 PM (GMT -6)   
Good idea: Survivor Monday

This past weekend was no picnic in the park, but there was a decrease in pain levels as compared to my normal. The previous weekend for me was like being in Pain Purgatory with no way to get out of it. It can't be bad all the time, this is what I have to keep telling myself. With no chance (outside of the proverbial miracle) of getting any physical improvement, I just have to keep bearing what I bear, the best I can. Having a great oncologist/pain manager really helps my existence.

david in sc
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

ButterflyKisses
New Member


Date Joined Jun 2012
Total Posts : 8
   Posted 6/25/2012 4:48 PM (GMT -6)   
Happy monday to all. It has not been a good one for me so far. Today is the 3rd day of nonstop rain here so it was a wet yucky weekend. My back pain has been alot worse and then to top it off i woke up w terrible pain in my shoulder this morning. I injured it playing tennis few yrs ago but had not really had any other problems w it since. Well since this morning Ive had a sharp pain in it. I can move my hand and arm fine but if I try to twist it or lift it sideways ( not sure if that makes sense)the pain is excrutiating. Feels almost exactly the way it did when I injured it originally. I wonder if i somehow reinjured it during the night or if maybe its related to the weather. Either way it has made for a pretty miserable day. Hope youve all had a good weekend and are surviving your monday :)

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 6/25/2012 6:46 PM (GMT -6)   
Happy Monday, Sorry to hear so many are in pain today. The weather here is miserable so I'm a bit achy myself, but overall doing well. Hope everyone's Tuesday is better :)
Chronic pain, Depression, Fibromyalgia, Tennis Elbow (both arms), Arthritis (knees and fingers), Diabetes. Ruptured disk L-4, Severe degenerative damage L5-S1, ACDF C5-C6

millymilan
Regular Member


Date Joined Jun 2012
Total Posts : 104
   Posted 6/25/2012 6:46 PM (GMT -6)   
I have been waking up to a lot of sharp pain and stiffness in my back and legs, This week end was no different. I did have a fibro flare up too on Sunday. So that did not help matters. I was thinking about the last time ( this past week) I was at the pain clinic. I did not like the way I was treated so I switched providers. I will be seeing the new provider this Friday, I want to have some clear ideas on how to handle my chronic pain. I was under alot of stress over the weekend that probably did not help my fibro at all. Today doing a little bit better with the pain.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9661
   Posted 6/26/2012 8:32 AM (GMT -6)   
Still dont have a computer, but soon more parts are coming, ( fans) getting appointments scheduled, got my mri's set finally, so July is pretty busy and its now very hot in Texas. Prayers to everyone affected by the wild fires and to the flooding in Florida, many many prayers...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/26/2012 8:46 AM (GMT -6)   
 
         Chartreux!...I will be when you get that computer up and running! wink
 
      Whew! Doggy!...it's hot here! confused ...at around 104 to 106 degreese! I'm now sporting a Fentanyl patch, so I have to be careful to stay out of the heat. It's a great excuse for getting out of mowing. tongue
 
    I'm still not happy with the med change, but were getting there slowly but surely. We have lost two of our cats lately, and not sure what happen to them, but I suspect they got too far into the back forty, and a wild animal got them. cry One of them just had kittens a few weeks ago too!
 
     We have been letting the dog in the house when I get home from work, but them let him back outdoors when the sun has gone down, and cooled off a bit. Foster is a black dog...and it doesn't take long for him to get hot. Poor little fella! shakehead
 
      I hope you all have a better week...and I didn't mean to step in on Tina's toes by posting this Survivor Monday.....I thought she was going to be off line for a couple of days...and was helping her out.
 
      Take care!
 
         SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Post Edited (Screaming Eagle) : 6/26/2012 10:44:10 AM (GMT-6)


B38
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/26/2012 3:29 PM (GMT -6)   
I have only been on this site for a few days and in a reply from Screaming Eagle on a problem I am having with my SCS he mentioned that compression fractures and disc bulging may be caused by the SCS. I am looking for anyone that may have had a disc problem caused by the lead off of the SCS. The SCS was implanted due to CRPS in my left hand I and now my right hand and forearm are numb and extremely painful because the SCS lead at C1 has possibly caused my disc to press on the nerves to my right hand. I wll have a Mylogram on 6/3/2012 to find out for sure. Today I met with the SCS sales representative and he said the SCS was operating as it should but would not commit to saying the lead could cause the disc problem. Thanks to Screaming Eagle I at least have a possible cause.
  Any information from anyone will be greatly appreciated.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/26/2012 3:52 PM (GMT -6)   
Hello B38!

I dont ever recall making that statement, and if I did that is clearly wrong! Can you refer me to the post please? I certainly would want to correct that if indeed that is what I said.

I must have been sleep writting or something to make that kind of error….but I do make them.rolleyes

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/26/2012 4:03 PM (GMT -6)   
B38, I have searched all of your post, and you have posted 6 times here on our forum….the only reply I gave you was what is pasted below. I'm not sure if you are also using another forum, and they have a member with the same username as I….but I clearly did not tell you that the SCS unit might cause bulging disc and compression fractures, and would never do such a thing.

Hope you get all of this figured out.

SEwink



Hello B38!

I will be of little help on the SCS issues, but try this link. It is actually the first page I came to using our search feature located here in the upper righthand corner of this page.

www.healingwell.com/community/search.aspx?cx=010904608862850737972%3A1v124njdg5g&cof=FORID%3A9&ie=UTF-8&q=scs+chronic+pain+forum&siteurl=www.healingwell.com%2Fcommunity%2Fsearch.aspx%3Ff%3D16&ref=www.healingwell.com%2Fcommunity%2Fdefault.aspx%3Ff%3D16%26m%3D2448444&siteurl=http%3A%2F%2Fwww.healingwell.com%2Fcommunity%2Fdefault.aspx%3Ff%3D16%26m%3D2448444p

Good luck!

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Post Edited (Screaming Eagle) : 6/26/2012 4:07:53 PM (GMT-6)


B38
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/26/2012 4:53 PM (GMT -6)   
CRPSpatient
Forum Moderator

VIEW IMAGEVIEW IMAGEVIEW IMAGE
Date Joined Mar 2011
Total Posts : 801
VIEW IMAGE Posted 6/24/2012 4:56 AM (GMT -6) VIEW IMAGEVIEW IMAGEVIEW IMAGE
Hi B38 - I didn't realise that you were another of us with CRPS/RSD. I'm sorry you're a member of that particular club. I've had it 13 years.

On SCS - we have got one member, Kristi, (her username is Rhaevin) had the SCS implanted for upper body CRPS. I know that she has had a lot of problems with shaking and difficulty walking when she has hers turned on.

I have full body CRPS, but only my legs covered by the stim. I do have problems with that disconnected sensation, and my legs will twitch or buckle - but I find this is only when I have the unit turned on. If it's off I don't have those issues. I know it sounds like a really stupid question, but do you improve with your stim turned off?

Hope your appointment yields some answers.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump
I am sorry Screaming Eagle I miss read the post here is a copy. Please accept my apology. Thanks

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/26/2012 4:56 PM (GMT -6)   
No worries! It's ok…I make mistakes as well. Were still friends! tongue I just knew I would not say something like that! LOL

Take care, and I hope you find a solution soon.

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

B38
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/26/2012 4:59 PM (GMT -6)   
wink   wink wink   Thank You

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/26/2012 5:04 PM (GMT -6)   
Your so very welcome! smilewinkgrin Keep posting your questions…and maybe it will get a few more responses. However…please start a new thread for it…as it will get more attention that way.


SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

B38
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/26/2012 5:14 PM (GMT -6)   
I have learned more in a few days here than doctors have told me two years. I hope to become familiar with everyone. And maybe pass on something I have learned to help someone else.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/26/2012 6:51 PM (GMT -6)   
B38,

You know... that's very true. I've learned so much here myself... I hate having health/pain issues - but at least I'm empowered w/ correct knowledge and information... and that helps.

And it does help to pass along your own experiences... it makes me feel that at least some of this has a purpose, lol. :)

Take care.. hope to see you posting more. --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/26/2012 11:04 PM (GMT -6)   
Hi B38... Yes, I have compression fractures and some minor disc bulges in my spine... the compression fractures do actually interfere with the SCS because I have a bad Fx at T12, but they weren't caused by the SCS. Has your tech tested for things like current leakage? Have you got more than one lead? Has he made sure that you don't have two leads interacting?

My weekend was mixed - my parents came back from their trip, which is wonderful. I've missed them - and been thoroughly fed up with having my brother and his girlfriend at our house - but I've also had a bad cold (also courtesy of brother and gf) and now ended up with very bad bronchitis. Staying warm in bed with antibiotics and ventolin because by the time I saw my doctor yesterday my breathing had got so bad I couldn't even speak to him to say hello. Had to have ventolin there in the clinic and he had oxygen ready if I needed it. I do get it almost every winter as soon as I get a bit run down, but I've haven't had it this badly for a while :-(

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump
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