Arachnoiditis/Chronic Pain

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CrazyDaze
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/19/2010 9:52 PM (GMT -7)   
Hello to you all, hope this is where I start my day or evening here, I know it upsets people when posts are not put in the correct places. I am very new to these forums, I do wonder around every now and then looking for people with the same plight as mine. I think it must be human nature to do so, to try to find and seek out people that have the same issues so we can compare and try to see if something actually worked to take away the pain we feel. Alright my plight.. well it started like many of yours many years ago, I broke my back, riding motorcycles. I am now a 49 year old wife and Mother that basically played sports, never stopped and now pay for my crimes of fun. I do not regret those days of fun and frolic but certainly have my moments in these times of pain.

The now, well it is not the best, lets see 4 years now, post Spondylolisthesis, Fusion with hardware L4,L5, L5-S1 Narrowing –Bilateral Adhesive Arachnoiditis – Severe Spinal Stenosis – Scaring – Currently undergoing Medtronic NeuroStimulation Therapy until April 20th 2010 ~ Neck Ruptured Disc’s .C4.C5 with large Osteophytes and bone spurs. This was to be fused but the doctors chickened out due to the development of the Arachnoiditis. Frankly I am not real sure what the actual Diagnosis is anymore. I am sure I am missing a few things, and not sure it really matters it might but for now to just get started here and at least say my hello and a greeting I hope not.

I guess, well I know I am now looking for companionship in this plight of pain as in this trial I am now undergoing I find myself in a failed experiment in which so many looked to me for hope it just has not , I know they all wished it would work....but I know they wished it would work but it has not. I feel more lost, more in pain, more deeply troubled than ever before. I have always just gone on, my doc knows I am the one that just goes, I get yelled at my my family all the time, DO not do that blah blah... well so what I will hurt no matter what so ... I just say do what I can now, I think I do understand my plight, it is here to stay and getting worse daily. So the things I do are so I can feel alive, I refuse to give in. Though the pain may take it's toll and scream inside me, I will not let it win. Yet days like today happen, and I die inside...I just feel my family can no longer understand, my husband had a severe head injury first jump back from Saudi Arabia in 1992 Us Paratrooper. So hands are full, yet I must not throw the towel in.

So here I am searching for like people...

Hoping to find

Perhaps solace?

Thanks for listening..

CrazyDaze in NC

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 4/19/2010 10:52 PM (GMT -7)   
Hi CrazyDaze!

You are an amazing woman and I admire your spirit that you have gotten this far. I doubt I could hold up, but I can see where you more than have your hands full. It must be extremely difficult facing all of your challenges each day. But those of us with chronic pain eventually come to the realization that it's here to stay and we must make our lives in spite of it. Still, we need what everyone else does... love, companionship and understanding. We also need to have fun, know we're loved and feel we have a purpose in life. IMHO, that's what makes like worth living.

I have some issues with L5/S1 but no surgery. The nerves down the legs pinch now and then and gives the word pain a new meaning. Also have quite a bit of arthritis in my neck area. Not sure what to do about that one except just deal with it. Most of my pain comes from fibromyalgia and the neck so I might not be the person you're looking for but I do want to welcome you to our family anyway.

We have a lot of people here who have back problems and surgeries and they'll be by soon to share...stay tuned!

Chutz
Gravitation is not responsible for people falling in love.
Albert Einstein

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


CrazyDaze
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/19/2010 11:02 PM (GMT -7)   
*Smiles* Thank you all words that turn a face from a frown to a smile are worth looking at and you have started my visit here in just that manner.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 4/22/2010 2:31 PM (GMT -7)   
Crazy Daze, well, I am going to try this one more time, lol. I just lost an entire response to you and have no idea what button I hit that caused it either, story of my life., lol. Wow, I read your story and boy do you have one to tell. You really do have a plate full and no wonder you feel as you do. I totally understand the family thing. I found it much easier for me to not discuss my medical issues with anyone in my family. It is not something I recommend to everyone else. I know alot of them have the very best intentions but I have found only another person suffering with CP can relate to the every day challenges. It has just worked for me and I don't have the grief anymore to put up with or deal with. For some reason many times families think we are suppose to just sit down in a chair and let the world go by. Well, that doesn't get laundry done, the house cleaned, the yard mowed, shopping done none of that stuff. Since I don't have a money tree growing in my backyard these things fall on me to take care or they don't get done, its real simple. I do it all based on how I feel that day, it is not like it use to be here, not by a long shot.  These activities always lay me up for a day or so but thats life as I know it. Mrs. Clean moved south on me a long time ago, have not heard from her since, lol. So far the neighbors have not had to call the police because of us streaking because of no clean clothes to wear, it gets done the same as the house.
 
As you have seen in my signature line I have the Intrathecal Pain Pump. My pain has been under the best control this past year for the first time since the pump was put in back in June of 05. My former PM dr stopped practicing PM and referred 45 of us pump patients to a retired neurosurgeon who is a brain with these pumps. He has no clue what a favor he did for us 45 people.  It is a slow process of rebuilding your life and I am still not there and figure it will take many more years. All we can do is take it one day at a time.
 
Since your trial with the SCD was a bust what is the plan for you now? Do you have a lot nerve pain, which I am assuning you do since you did the trial. I know pain medications have little effect on nerve pain and most need meds that deal with nerve pain. Something I will throw out and you probably already know depression and CP go hand in hand. If it were not for me being on medication for the depression I am really not sure where I would be now. For some it will also decrease their pain a tad. If you are not on something you may to consider asking your PCP to try you on one. It can be a hit and miss on which one will work, there many different ones out there.
 
I have suffered with low back problems for over twenty years and then of course the neck has to kick in. I have tolerance issues when it comes to medications and we ran out of pain medication  options for me and that is how I ended up with the pain pump. But, I am not limited to just having problems with pain meds its everything. Drs just scratch their heads and tell me I am a challenge.
 
Please update us on where you are at now. Mods have no set time to be on the forum. We volunteer and we do not have a schedule. We are here as time allows us and health issues. I am here sometimes in the wee hours reading when I can't sleep, I just never know. Some of the other members have sleep issues too and they are often stop by.
 
Again, welcome aboard.
 
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/22/2010 2:47 PM (GMT -7)   
Hello CrazyDaze! Welcome to the Chronic Pain forum! You have certainly come to the right place for excellent support. Many of the members here can sympathize with your health challenges and problems.
I wish you the best, and hope you find some sort of comfort and answers to your questions.

SE
DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.


Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 4/22/2010 2:53 PM (GMT -7)   
Hi Crazydaze,

**(I deleted my other post to you on Straydog's "new member" one so I could put it here)

Welcome to HW:)

I think because your first post was close to midnight, it might have gotten lost in the shuffle the next morning...and sometimes it can be quiet on here as well...

So I promise you that nothing was intentional! So try not to take it personally, we do care and are happy you are here!...and as you talked about...we all have our good days and bad days with pain so it can lead to some slow times on the board..

I am sorry that you have chronic pain..as it's a tough beast to live with...as you can see on my signature..I have 3 cervical fusions...and also a bunch of others through the years...so I can empathize what it is like to be in pain each day..

HW is a wonderful and caring place filled with different stories of living with CP....and I'm sure that there will be others that have a similar diagnosis to yours that can help you as well....

So hope you decide to stick around and get to know us as we can get to know you:)

Take care


--------------------------------------------------------------------------------


SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Post Edited (Snowbunny21) : 4/22/2010 7:09:39 PM (GMT-6)


momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 4/22/2010 4:23 PM (GMT -7)   
Welcome to the forum.  You have found a forum of wonderful and caring people.  We all know what it's like to have chronic pain.  You sure do have your plate full.  I'm sorry you're having to go thru so much.   You sure are welcome here.
 
hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/22/2010 4:47 PM (GMT -7)   
Hi CrazyDaze...

Welcome to the board... I'm sorry for all that you are dealing with... but am glad you found your way here. I, too, am a wife and mother...and I know how hard the days can be. There's so many here - with a wide variety of circumstances - that "get" (better than anyone) what it's like to live w/ chronic pain. So, I hope you'll keep posting and that we can get to know you...

Take good care...and hope to talk w/ you more...
Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation


Frenchie71
Regular Member


Date Joined Jan 2010
Total Posts : 21
   Posted 4/22/2010 5:41 PM (GMT -7)   
Hi there!

Rest assured you are at the right place. I know it's has been only a couple days now but I do feel a difference already. here, you can be yourself, which is a luxury that most people on this board can not afford in the "outside" world.

Again, welcome.

By the way, I also have back pain (lumbar) like you. I am a dad and have two kids and I live in Quebec, Canada.

Frenchie

Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 4/22/2010 6:07 PM (GMT -7)   
Hey Daze,
I posted on straydogs post and wish you would go over and read what I said. It meant a lot and my arms are falling off now! I'll talk to you soon.
Catz4
I'm called Cat or Stac at times, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4/DXed-Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, IBS, Panic Disorder, ICC , Fibromyalgia, Migraines, Bipolar Disorder, Chronic Muscle Spasms, Torn Rotator Cuff in Left Shoulder, Frozen Shoulder. I had an emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06. I'm frightened most of the time and scared the rest! I would love to be heard by friends, family and now most of my doctors has seen the proof of my pain. What validation. This has beomce one of the most important words to me...to be validated. Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name. Meds for Panic Disorder, Pain, Bipolar, IBS, Hypothroidism, Diabetes, Insomnia and then some.
 
 


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 4/22/2010 7:42 PM (GMT -7)   
See Daze,
I counted 9 replies and I make ten! I sure hope you are still around to read all the posts from your new friends! Sorry I didn't get back at 5 like I said I would but I had some setbacks that kept me away from my comp. I'm sure you know about such things! You sure do have a full plate! Geeze, I thought I had it bad but thats how this place works! Just when you think you have it so bad along comes someone who is much worse off than you are and it makes you realize that you are lucky that it's not worse!

Hang tough and stick around! You will be a member of your "other family" sooner than you think!!!

Your new buddy,

Pete

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/23/2010 8:48 AM (GMT -7)   
 
 
   Dear CDaze,
 
     Good morning. My name is Dani. It is very nice to meet you. Please, excuse my tardiness in response to your introduction thread! I must have missed it completly. I am glad you found Healing Well Community. I do hope you find it a nice, relaxing enviroment to be in.
 
      No worry about posting in the wrong place or not. We only like new threads because more often than not, the "chroinic pain" stemms from multiple sources and we just cant get it all out and off our chest in a "quick intro" thread. Also, we like to talk to and personally welcome new members. It is important to us that we to get to know you better :-)  
 
     I am terribly sorry that you have so many painful conditions in your spine and body. I can tell plain as day that you have had to endure through nearly impossible odds. It must take a tremdous amount of strength to endure through such intensly painful days. *hugg*
 
     I am sorry the stimulator trial didnt go well. There are many people who go through the trial and it just doesnt work or more commonly one works for parts or types of pain but not all of the pain overall. Unfortunatly, as you know, multiple types of pain often are present and there just isnt a "One options cures all" fix. shakehead
 
     I have eaten up all my morning free time. I wish I had more time to chat. I do however want you to know that it is a pleasure to meet you *hugg* I look forward to getting to know you better as time goes by. You are in our hearts here.
 
*warm huggs*
    dani
 
    

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/23/2010 9:10 AM (GMT -7)   
At times the folks here have more compassion than any of my family members could, I
guess it's becasue it's hard to see chronic pain and things are more believable if they can see them,
but enough about me rambling on, there are lots of nice people here and I'd like to say nice to meet you but sure wish it was under better circumstances than chronic pain...
You sound like a remarkable person and that there is so much you could help us out with...
nice to meet you
(((((((((((((((((((((((((((((((((((((((((((((((((CrazyDaze))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
just a side note, maybe look into a good pain management psychologist, as that can help...mine
has gone over relaxation techniques that help me sleep a little better at night, cause getting a good night sleep
can sometimes help with the pain, just an idea, okay...(meant in a nice way)
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 4/23/2010 11:03 AM (GMT -7)   
Hi CrazyDaze.  It's me again.  After we talked in the chat room last night, I researched Adhesive Arachnoiditis up on the web.  Wow, what a painful condition you're having to put up with on top of the other things.  I'm sorry.  ((((((((((((hugs))))))))))).  It was nice to see you in the chat.  Take care.  I hope you have a low pain day.
 
hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety

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