chronic, deep, heavy pain

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Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 2/1/2010 5:23 PM (GMT -7)   
confused Hi, I'm Cat and I'm new to this or any other site dealing with chronic pain. I'm a bit shy about jumping in here, but jump I am. I have been diagnosed with Syringomyelia. Oddly, not many of the multitude of doc's I see even know what it is and have to go back and verse themselves on it to treat me for all the other mess my body has become. A "Syrinx" is a hole in the spinal cord that collects fluid. It's made a cave in the middle of my spine that has caused quite a bit of damage from C1 to T1. In the process of all of this I became the only diabetic in my family, have hypothyroidism, a "frozen shoulder" and the list goes on. I feel like one day, life was good and I felt good and then I was pulling weeds in the yard when BOOM, ruptured 4 discs in my upper back. That's how they found the Syrinx. Was that a good thing or a bad??? My neurosurgeon treated it for 3 years then sent me to pain management 3 years ago and there isn't much management going on. I'm in bed 90% of the time (I'm 51), and I'm in such unbelievable pain...well, I'm on a Chronic pain site so, I guess it is believable and that's why I'm here. I can't explain it to my husband because he just can't fathom the pain. It makes me have intense migraines which he has seen and somewhat understands because I do really silly things like trying to bargain with God! LOL! I guess I just think if I could do more, be a better person, anything...but that is not realistic. My surgeon never laid out the prognosis for my husband as bluntly as I think he needed to because the day I walked into pain management, the dr there said, "Well, we'll try and make you as comfortable as we can and if this continues to grow, we'll help you through the paralysis and for the end stage you'll use hospice care." My husband looked at me and that look with haunt me to my last day. You see, 5 years before we met, he lost his first wife to brain cancer. He heard HER screaming, pleading with God and now he hears me. I feel such guilt that this has happened to him.

O.K., I'm rambling. I don't have anyone who KNOWS chronic pain, who feels chronic, deep, heavy pain and though I see a phychiatrist, it doesn't really help talking to him. I believe only someone who knows the pain of the every single minute of every single day can fully understand. Is that true?

Thanks for letting me have a place to just be...

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 2/1/2010 6:10 PM (GMT -7)   
Catz4 Welcome to the Chronic Pain forum! I'm so sorry about your condition, and no nothing of it at all, but I'm sure there are some members who will know of it. We are here to help and listen when ever you want 24/7,... so just let it rip when ever you feel the need. The members here are wonderful, and you may want to join us in the chat room on Thursday evenings. Watch for the weekly announcement from our Moderator Chutz. So Please join us there. If you have any questions, just ask, and you might want to start with the Chronic Pain 101 at the top of the forum, as there is a lot of good information there. Also please take the time to read the forum rules. Again, welcome to the forum, and I hope you find the much needed friendship, understanding, and advice.

Your Friend,

Michael

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 2/1/2010 7:47 PM (GMT -7)   
Welcome Catz! I am new here as well, and from what I've seen so far, this is a pretty special place. Nobody truly understands pain unless they're going thru it themselves. We all have different issues here, but we all experience pain, so you are most definitely not alone.

I hope your doctors are working with you to continually try to find things that will help you. You don't mention medications, but I'm sure you must be taking something. Do you do any type of therapy at all or have other people on your health team that help?

I'm sure we'll see each other here...I've been off work for a few months now on disability and and moving from short term to long term, so I'll probably be here often. I'll look for you to see how you're doing.

Hang in there...there's lots of help and support around!

Pam
Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Surgical Adhesions
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Nortriptyline
Other: Vitamin D, Multi-Vitamin


Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 2/1/2010 9:08 PM (GMT -7)   
Thanks Pam and Michael for the welcome. I'm really nervous because though I've read the rules and such, I don't know...O.K. Pam yes, I'm on lots and lots of meds, but apparently I should have told them quite some time ago that the meds they were giving me were not managing the pain so, last week they started me on Percocet. This is the highest dosage they can give and it's just a trial. The doctor said at the visit that if I don't get some relief from this, they will put me on meds I will never come off of. What?? I haven't been off pain meds for 6 years now! Anyway, the Percocet is really not doing what I had so hoped it would do. I want to work with my clay and make cards, sew, all those things that have always brought me such joy, but if I'm up for more than 45 minutes at a time...wow! I think the valuable lesson I learned at the doctor's office last week was simply to tell them what I'm feeling. It just feels like they don't care. Like I'm a cow in a cattle drive.
Michael, thanks for the tip about the chat room on Thursday; I am very interested in how others cope. Apparently what I have as the main diagnosis is very rare so, I'm not surprised it isn't listed here and without going online to look it up, it's not something someone would know. According to the American Medical Association, less than 50,000 people in the U.S. have this disease. I'm lucky that way. Thank you both for responding and if I'm doing something wrong on these forums, please let me know. I do not want to offend anyone. Gosh, I've been dealing with this mostly by myself for 6 years so, any input would be great.
Catz4


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 2/1/2010 10:47 PM (GMT -7)   
Hello Cats4! Can you please tell me what dose they are giving you with the Percocet? Is it #10's or 5's I'm also on Oxycontin 30mg twice a day here, and have been on pain meds for more than 7yrs now. Pain meds are not really supposed to take all of your pain away, but give you some relief. I have also taken myself off of them cold turkey, and had no withdrawals from it at all. Let some of the other members have a chance to respond to your post, and don't worry about anything, such as rules. I just wanted you to start somewhere and thought it might be a good place to start by reading the Chronic Pain 101 and the forums rules. Hang in there, and ask as many questions as you want. How long have you been seeing your current Pain Management Doctor? Does he listen to you? Can you freely talk to him? Do you have a good support system at home? Tell us a little more about your self when you get a chance, and lastly, just hang in there, and keep checking your post for replies, as they will come. There are a few night owls, and they will give you some food for thought. We are all in the same boat here, and you will be amazed at how similar the way you feel compared to the rest of the members here.


Michael

Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 2/1/2010 11:44 PM (GMT -7)   
Thanks Michael, I'm on #10's and I certainly don't expect to be pain free; I'm a realist. However, some relief is what I'm seeking, just relief. I've been with pain management for 3 1/2 years and was under the care of my neurosurgeon for 3 years before that. first on Lortab 10/500 and it went to 6 a day which wasn't cutting it. I finally (this past week!) told my Pain Management (P.M.) Nurse Practioner that I couldn't stand it anymore. As far as my P. M. dr, I haven't seen him in about 6 months! I see a N. P. and she's the one who has switched me from Lortab to Percocet. Anyhoo, no I don't feel my actual Dr. of 3 yrs. knows how I feel. But I must admit, I haven't been open in telling them the amount of pain I'm in because though I am rarely intimidated by doctors (my whole family are doctors) this P.M. deal (signing contracts and all that) is a different ballgame all together. As far as home, my husband is the caretaker. We have 6 children, 4 adults who live all over the States and 2 who are 11 and 12. He takes care of them, me our animals and everything else. I feel really bad for him. Well, thanks for making me feel welcome.
Catz4
Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, Adhesive Capsulitis "aka" Frozen Shoulder, IBS, Panic Disorder, ICC (Interstitial Cystitis), Fibromyalgia, Migraines
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name Meds for Panic Disorder, Pain, IBS, Hypothroidism, Diabetes and then some
 
 


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 2/2/2010 4:38 AM (GMT -7)   
Cat, sounds like it is time to sit down with your doctor for a heart to heart discussion. Maybe it would help to keep a pain journal for a time before your next visit. Also, make a list of questions you may have so you don't forget. Remember too that your doctor works for you and if you feel like your needs aren't being addressed then maybe it's time to try someone new.

There are alot of Extended release meds out there that would probably be better at keeping your pain levels in check. Most of us use a extended release med along with something for breakthrough pain. I take oxycontin every 8 hrs along with oxycodone up to 3 times a day for breakthrough pain. Neither of these have tylenol in them, which percocet does, so I also add in some tylenol when I have the overall body aches.

Good Luck and keep us updated. We don't have all the answers but we can share information and hopefully learn from one another.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 2/2/2010 9:15 AM (GMT -7)   
hi catz4,

I am melissa and I am 31. I also am intimaidated by my pm program. they made me feel like a complete jerk for teling them how I felt last month. But wait till i see them on wednesday! I will have to contain myself. I decided to tell them that they make me feel bad about myself and afraid to talk to them. I am going to be completely honest, if they dont like it too bad. IF they kick me out, I will have to deal with it. But I know what you mean. welcome to the forum and sorry you have to be here.
Chronic Lyme Disease
Fibromyalgia

Chronic fatigue syndrome

Polycystic Ovarian Syndrome

Sleep Apnea

Hypothyroidism

Adrenal Fatigue

Type 2 Diabetes


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 2/2/2010 11:50 AM (GMT -7)   
 
 
   Dear Catz,
 
     Good afternoon. Welcome to the Healing Well Community. My name is Dani and it is a pleasure to meet you.
 
     I am sorry you have to deal with a rapidly progressing spinal deformity. I too, have a spinal deformity, but my doctors are hoping to slow or stop the progression. Between the bones loss, the insability and the factors that they cannot pinpoint a cause to yet.... I fear how much more of my mobility will be stripped away. I am new to "illness" thou. This has all happened in only 2yrs for me. You, on the other hand, have been through so much, endured throu so much pain that I cannot begin to imagine how you do it all.
 
      When my doctors spoke to my husband, well.... he cried , for a long time. Then went out on a 5,000 shopping spree for 3 days. He scared me. But, later he came with me to the pain psychologist and eventually we both got on track with life. The uncertianty of my health is still there, but I like to think we are better prepared for anything that comes our way.. and have been so far, come to think of it. Have you and your husband ever thought about seeing a pain psychologist?
 
     I can certianly understand when they say "we can make you comfortable but, you will have to begin long term med treatments." In my case, all that ment was I was to slowly begin to increase doses of medicines (some took nearly 3mos others only 2mos) that I have to take, no matter how I feel that day, until it is time to slowly decrease them, if such a time came. I do not know if that is the same for you thou?
 
      ..! Before I forget,
     Im sorry I keep getting off track here.. But, there are "spine specialists". These are pain doctors/surgeons who specialize in spinal deformities and the pain management of spinal deformities. Maybe it would be something you would want to try? I see a spine specialist and the difference is like night and day. They "understand". You know, the mobility, the pain, the unique circumstances that surround progressive spinal deformities. Kinda nice, you know? Okay, now I really will stop chatting away!! Was very nice to meet you. I look forward to getting to know you better as time goes by.
 
*huggs*
  dani
 
 
 
    

 

 

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

 

 


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 2/2/2010 5:43 PM (GMT -7)   
Good Evening Catz4! Well it looks like you are in tune with where you are at with your pain. One thing that, my PCD is very much against, is when he sends me to a PM, he does not want a NP treating me at all. He wants me to see the PM he sent me to, and nobody else, and for good reason...they are the experts. I'm just a guessing that they just now switched you over to the Percocet's, and as you have said they are not effective for you. Lets hope when you go back, they will try something else. I'm in favor of the extended release meds, so that you wont have the sharp ups and downs. I just started on Oxycontin a few months ago, and It really helped me a lot, although they don't last the 12hrs they were supposed to. I was only getting 2.5 hrs out of a Percocet #10 325mg...so the Oxycontin was a welcome relief. You seem to have a good grip on how you feel, so just keep pushing for a treatment that gives you the relief you need. It is very nice to talk to you, and we need members and visitors like you to share your story here. We are always striving to learn and support here. Please keep posting and sharing with us, and feel free anytime to ask anything or just to rant a little from time to time.

Michael

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/2/2010 8:17 PM (GMT -7)   
Hi Cat,

I don't know that I can add much more to the words of wisdom that you've already gotten, but I wanted to welcome you to HW. This is indeed a very special site. Where else can you find people who completely understand what you are going through & don't question you?! It is so hard to be a member of the chronic pain club when the rest of the world doesn't and can't understand. Everyone here is fantastic. We're truly a little family & we're happy to add you to it!

hugs,
Skeye

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 2/2/2010 8:30 PM (GMT -7)   
Welcome Cat, I find with degenerative diseases its hard to decide when to go back for more help. I've just been put on to fentanyl patches 37mcg . It sort of pushes my pain awareness back so I sort of don't care about it but its still very much there.
My husband is in complete denial and hassles me about taking any meds. Half the time I'm in denial too, maybe its a coping mechanism. But just wanted to let you know you're not alone in your hassles and frustrations of dealing with chronic pain.

Warm welcome, golitho

Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 2/3/2010 1:22 AM (GMT -7)   
Gosh everyone, thank you so much for reaching out. It's 2:00 in the morning here and as usual, I'm awake. I guess I'll go backwards here and start with Golitho. I too was on Fentanyl patches when I was seeing my neurosurgeon for the pain. It helped, but about 5 months after starting on this and Lortab, my colon ruptured and I ended up off the patch for whatever reason. Long story. Skeye, thank you for the welcome, every word is very important to me. Michael, my neuro sent me to see this one doctor at this particular pm group and for whatever reason I got another doctor. I saw that doctor for a while and then he pawned me off on the NP's. I think the depression I am going through has made me pretty passive. That's crazy because I am not in the least passive. Yes, I just began the Percocet however, the NP who prescribed told me to call her within 2 weeks if it isn't doing what we had hoped which is to take the pain down to a level I can function. O.k. as I go up...wait these are the answers, no I had no idea there was such a thing as a spine specialist. I've seen just about every other kind of ...ist! And though I've got tons of doctors (I haven't even scratched the surface of things that have happened in the past 6 years to my body) I've never heard of a pain psycholosgist. I'll check that out. I also am going to begin doing a pain chart in the morning. Amazing thought and concept that! I am looking forward to seeing the look on my NP's face when I come in with information! For that I thank you all and keep it coming!
Catz4
Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, Adhesive Capsulitis "aka" Frozen Shoulder, IBS, Panic Disorder, ICC (Interstitial Cystitis), Fibromyalgia, Migraines
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name Meds for Panic Disorder, Pain, IBS, Hypothroidism, Diabetes and then some
 
 

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