My ride to hell and back....

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Regular Member

Date Joined Jul 2005
Total Posts : 229
   Posted 4/7/2010 10:57 PM (GMT -6)   
we planned a wonderful party for my Mother the day before Easter because it was her 79th birthday. We decorated with balloons and streamers and signs.....the whole works. The grandbabies had an Easter egg hunt that was just adorable as their ages ranged from 13 months to 3 yrs. It was a very warm day, so being very cautious I removed my Duragesic pain  patch "just in case" I would sweat and overdose. Stupid me did not have another one to put on  when the out door activties were finished so about 7 hours later I had to leave and go home and crash! I was in severe withdrawls and so help me, I now understand why people do what they do to get their next dose of whatever to stop the horrible pain! I was cramping everywhere. I was having some mild chest pain and I also could not sit still. My husband would try to get me to do relaxation breathing and while I was trying to participate I was also trying to keep from screaming  because the muscle contractions hurt so bad!!! I felt like my skin was ripping apart!!  I NEVER want to go through that again!  After trying to get another patch on it was impossible to get one to stay onto my body.   After the third patch we were finally able to get one to stay on.  Of course this will make me me short for the month so I have and appt. on Fri. with my doc. because I want off of the patches all together..     BUT.....HERE IS MY RIDE BACK FROM HELL.......I got a phone call from my attorney today and he got a letter from the Social Security Board and it looks like they are going to approve my case! Praise God!! I haven'e heard anything yet myself but it looks like they will approve my disability case starting July 31, 2008.  I have cried tears of joy all day. I've barely been able to walk since Mon. My Fibro is really bad. I had some lab done a d my sed rate is up to 38, my neck and shoulder is swollen as well are my hand and feet. The rheumy just thinks it just the rheumy. I saw saw her on Tues..  Anyway, I have an appt with my internist on Fri to get off of these pain patches.   I know that he will be upset but he will just have to understand my point. I hope how soon I get a letter from the Sociial Security Board. When I get my letter....the party is at my house!tongue
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, bilaterial knee replacements, total left shoulder replacement, years of chronic headaches and chronic pain, asthma.
Find blessings in every day!

Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 4/7/2010 11:08 PM (GMT -6)   
Nurse, I can't begin to tell you how happy I am to hear that your disability is being approved. What a wonderful blessing after such agony earlier. I'm glad you were able to enjoy some of the activities, but I'm sorry you had to experience such pain as well.

Please keep us posted on the disability payments and how that works out for you. I hope you enjoy tremendous peace of mind from it

Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (Surgical Menopause and drug related), plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Flexeril, Clonidine plus Vitamin D and Multi-Vitamin daily

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 4/7/2010 11:10 PM (GMT -6)   

Wow, you DID go from bad to good, huh??

Let's start with the good... I'm so happy that you got approved through SSDI. That IS wonderful news... I know how happy you must be. Thanks for sharing your good news :)

Re: the patches and withdrawal... I'm so sorry you had to go through that! From my own experiences...and talking to others... I think the "withdrawal" from fentanyl is one of the worst things ever. I know the patches work wonderfully for some people....but getting off that stuff is a tough one. Hopefully, you'll be able to work w/ your doctor and taper down... but I know exactly what you mean about not wanting to experience that again!!

Again, congrats on your approval :) :)

Take good care...
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

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 4/7/2010 11:16 PM (GMT -6)   
Good evening Nurse2! Well sounds like Congratulations are in order for you! That is wonderful news! Skeye just got approved as well today!

I'm confused on the patch thing though? Is this something you can do with some help, and what will you do for pain once your off of them? Or did I miss something in your post?

I have heard of several members having trouble with the patch, but I really don't know anything about it. I did however have a 100mg shot of Fentanyl prior to my surgery
and it did help me some to relax me before the surgery, but it did not knock me out. It was my first time to have it and Dilaudid. I guess neither did well for me after the surgery.

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.

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 4/7/2010 11:52 PM (GMT -6)   
That's great news about the disability! That should ease your mind some. And hopefully your doctor can help you make a switch to something other than the patch in a way that's minimizes your withdrawal symptoms.

So glad the good news came!


White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 4/8/2010 1:20 AM (GMT -6)   
I am sorry about the trouble you have had with the patch! I do hope they can come up with something that will work for you and give you adequate pain relief!

I am over joyed for you and your GREAT NEWS! It will make things so much better for you! That should also mean ( I believe) that the end of this July you should also be getting Medicare part A & B iisn't that right or am I wrong about that? Is it two years after you get SSD? and if it is back dated to july 2008 then this July you would be eligible. I know that when I got my SSD approved I also got Medicare at the same time, as mine was back dated over two years! Anyway nurse2 I am so happy for you! I sure wish you did not have so much pain!
Hang in there we are all here for you!

White Beard

Regular Member

Date Joined Jul 2005
Total Posts : 229
   Posted 4/8/2010 8:27 AM (GMT -6)   
I can't tell you how much you all mean to me. I know that I have not been on this ride alone. I see my internist tomorrow and we will discuss how to get off the patches. The pain Dr. said that I need something strong and long acting and that my internist should be able to handle it but that if he didn't feel comfortable that he would be happy to consult with him. I honestly don't know why he (the pain doc) didn't just handle it right then and there but I guess they don't want to step on each others toes. My hope is to be off of the patch by next week as we go on vacation the last week of the month. How long does it usually take for you to start to get your disability checks? I know from working with with the government in an office they are usually tight fisted with their money. Does is take about 6 months? I was just wondering. What a whirlwind it has been these last few days!
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, bilaterial knee replacements, total left shoulder replacement, years of chronic headaches and chronic pain, asthma.
Find blessings in every day!

Veteran Member

Date Joined Jan 2010
Total Posts : 3557
   Posted 4/8/2010 8:32 AM (GMT -6)   
Wow..that is definitely a ride you have been on! I truly hope that you can transition smoothly to a different medication that works for your pain...

And congratulations on the disability decision:) I am in the beginning stages right now and know that it can be a long and arduous process...Thank you for sharing your journey!

I pray that you will be set up with pain control to enjoy your upcoming vacation..we definitely all need that down/relaxing and fun time to boost our emotional health to help us deal with our chronic pain...

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) Dec 2006

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 4/8/2010 10:36 AM (GMT -6)   
   Dear Nurse,
     Good morning. I hope you have had a chance to rest. I know you have been through a heck of alot of pain these last few days. I do hope you can transition off the patches as quickly as possible. It sounds like you do not like them atall, and who could blame you?
     I am so glad your SS case is approved. No more headaches from them! Though I am unsure how long before you get your first check.. I am glad it is done, over with, and no more hassles and time wasted!
     Where are you going for vacation? I too, am going on vacation. Not until June though. We are going to Florida. I have never traveled while "sick" so I have about a million questions to ask .. one of the doctors.. which ever one I see next. about traveling with medical devices and medications. Also need to bit the bullet and talk about the problems with mobility..and Im getting off track!! So sorry!
     I will end this here. Please know you are in our hearts here. Stay Strong!



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



Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 4/8/2010 11:38 AM (GMT -6)   
Hi nurse2,

Early congratulations on your disability! That is wonderful news! You certainly deserve it!

I'm sorry to hear about your troubles with the patch. The fentanyl patch was the only opioid (and I have been on many) that I had a hard time coming off of. I think we decreased my dosage by half every 6 days until I came off the patches, but I still experienced some nasty withdrawal symptoms. It could be because I was on such a high dose to begin with, but it is just one of the many reasons that I wasn't a big fan of the patches. Hopefully your withdrawal will be smoother than mine was! Best of luck & enjoy your vacation!


Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 4/8/2010 11:59 AM (GMT -6)   
Dear nurse2,

I'm so happy for you re: the disability!! Praise God indeed!

But I'm so sorry about what you went through with the fentanyl withdrawal. I was only on fentanyl for about two weeks, and it was affecting my breathing so I had to stop, but even two weeks were enough to cause me some withdrawal problems.

I did hate to stop it though because fentanyl worked great on my back pain....nothing else has ever come close to really controlling that for me. I'm on Dilaudid now but it's not as effective.

By the way, I found an old post on this forum about a product called Hypafix that works REALLY well to help keep the patch on. It is porous so it lets air through but it sticks really well. The gentleman who mentioned it in his post had found it in a Toronto Walmart, but your pharmacy can probably order it for you. They say not to put anything over the patch, but I just cut a hole in the middle of the larger Hypafix patch so that it was just covering the edges of the fentanyl patch and it worked great. It was the only way I could keep the darn things on!

I'll be praying that your doctor can help you get off the fentanyl without too many withdrawal symptoms!!
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 4/8/2010 8:49 PM (GMT -6)   
They will contact you, they will want a checking account number and they will auto deposit it in your account! For me, I get mine deposited on the third Wed of each month! Since they are back dating it to july 2008, once they officially notify you of there approval, it is not all that long of a wait. Things move pretty rapidly after that! nurse2 I am really happy for you!

White Beard

Forum Moderator

Date Joined Feb 2003
Total Posts : 16787
   Posted 4/9/2010 12:14 AM (GMT -6)   
Nurse 2 congrats on the SSD. I am so happy for you, that is a big relief. I know what you went through with the patch that day. I went through that all the time during the summer I was using them. They also caused me to sweat and the only way I could get one to stay on was to get my drug store to order Tegaderms. Had it not been for that stuff one would have never stuck to me. I am an outside person in the spring and summer and it took little for me to get over heated even in the shade and wham the next thing you know I am either sick from too much meds or in withdrawals from not enough. There was never an even balance the year I wore them. I constantly felt like I was coming out of my skin. After being bumped up on them I had some great difficulty urinating, which is a warning listed and my dr took me off of them immediately. Best thing that could have ever happened to me. I know they can be great for some people, but they are like anything else, they are not for everyone.
I do hope you can get changed over to something else real soon. Hang in there and take care. Please keep us posted on how you are coming along.

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.

Veteran Member

Date Joined Dec 2008
Total Posts : 773
   Posted 4/9/2010 7:24 AM (GMT -6)   


Congratulations on the SSD approval, its been a long road for you and YOU WON!!  WB is correct about Medicare, it becomes effective 24 months after SSD approval!  So happy for you!

I am so sorry you had so much pain/spasm, hopefully you are feeling better today!


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