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Posted 5/10/2012 8:34 AM (GMT 0)
Hello, my name is Kathryn, I am only 22 and I've been lurking around as a guest for about a month. I can't get back to sleep so I decided to create an account finally.

My story:
When I was 15/16, I was a bagger at the grocery store. One day I felt pretty bad pain in my lower right quadrant of my back. I brushed it off but mostly because my parents didn't believe me. I dealt with this pain on and off for years. In mid-November of 2007, I had a very bad flare up where I wasn't able to walk. I had to be assisted in getting around and could not drive. It lasted about two to three weeks and was sent by my orthopedic surgeon to pain management. I don't quite remember all this but I know I had three cortisone shots, with the last one on Jan. 16th, 2008. On January 24th, 2008, I was rear ended by some idiot drugged out kid on my way back to school from lunch break. I was in pain, again, and exactly a month (to the day) later I had a lumbar laminectomy at L4-5. I felt pretty great the first few months after surgery but after still had pain, which was expected. My ortho told me flat out it was a temporary fix and that I'd have surgeries the rest of my life between that and the spinal stenosis, both he considered genetic (screw you poor genes, thanks daddy!) so I dealt with the tiny flare-ups because they'd go away after a day or two and were manageable with ibuprofen. On my birthday in September of 2010 (the big 21, wow!), I had a small flare-up that became very bad within a week or so and had me bed ridden for days. I was already seeing a chiropractor for another accident and he was treating me. I started to feel better but he wanted me to see my ortho anyway. My ortho sent me to a neuro who told me I needed a fusion but wanted me to have the lapband placed because at the time, I was pretty big. For this I had to go to my PCP and get blood work but we ran into a snag in that plan - surprise baby! (My bf and I have been together since the day before my surgery but began dating in early December of 2007) Obviously lapband and back surgery were out of the question! Somehow, I made it through my pregnancy with less back pains and aches than I had planned for and due to morning sickness and a very strict gestational diabetes diet, I lost weight and wound up being 30 lbs less when I had baby in May 2011 than before I was pregnant (the were not alarmed, not even when I was 45 lbs lighter, before I finally started gaining). I went back to work in August of 2011 and had another flare-up later that month, lovely. I started to take care of it but it went away and I needed to get back to work (regret not taking care of it then, ugh!) Fast-forward to January 17, 2012. Bent over at work, straightened back up and I had another flare-up! Stopped working and tried worker's comp, got denied because bending over isn't anything. Couldn't work, walk, anything and had to care for baby (bf started a new job the week after I was hurt) but luckily was living at my parents at the time. That time it lasted about 3 weeks but I stayed out of work to care for our son as day care wasn't an option and I no longer had my own vehicle. They cancelled my health insurance and wouldn't renew my LOA (not FMLA anymore) so I lost my job. In March, I had another flare-up but it's been an entirely different road. The pain shoots all the way into my right leg and toes, rather than being gathered in just my lower back. My ortho said that he wanted me to see a neuro for the fusion and pain management. My bf wanted to try pain management and said he wanted to avoid surgery at all costs (PM said no avoiding it with the severity of the disc herniations L3-5), got one cortisone shot and was placed on Butrans patches (they worked so well, I love them... I seriously had very minimal pain). My insurance was still good and covered a portion of the shot but not enough and I owed them $200, which I could not afford (my boyfriend had lost his job and money is tight because baby comes first.) so I wasn't able to return to refill my butrans rx. I went to the ER but they thought I was a junkie and said I didn't have an emergency but with insurance, I stayed. Turns out I did because I had a lovely UTI! They gave me 16 5/325 percocets. On a scale of 1-10, without pain meds, my pain is an 11. Without an extende release patch, I can't sleep or eat. I struggled to care for my son and I'm alone because my bf is looking for work or doing side jobs to make some money and my parents are busy working. I had a good day and was able to get to my PCP, my mom paid for the appointment. He told me that once Medicaid was in place, I needed to have the surgery or I could lose feeling in my leg (it is already almost entirely numb from my knee down... I can feel the pain from my back and can tell when it is being touched but not much more, driving is nearly impossible because I can't feel it and when I walk, I roll my ankle constantly) so he gave me an rx for fentanyl 50 mcg/h patches. Without insurance, the cheapest I could get them for was $200. I signed up for a government run discount drug card and got my mom to pay for them for $131 and am in the process of signing up for the Duragesic free program. But they aren't lasting the full 72 hours, I struggle the last day and make it through with Tylenol. They're great because I can sleep (except right now) and most importantly, I can eat! I lost 35 lbs from not eating when I didn't have any patches in less than three months! I feel better weighing less but it was scary for me... I still can't eat like I used to, only very tiny portions but I'm glad I can eat again!
I am also struggling with depression through all this and I think still some post-partum even a year later. I love my bf but he doesn't understand dependency vs. addiction and believes I am an addict. I've tried to explain it to him but he comes from a family of addicts and doesn't listen. He also doesn't understand the pain because he says he's always in pain... He tells me to "harden the **** up" or something else along those lines. He's been semi-supportive but like I said, he doesn't get it.. I am thinking of asking my PCD to call in a rx for an anti-depressant that is either $4 at Target or Walmart or something very cheap on my government card... When I get Medicaid, I am going to look into some sort of metal health specialist, as well as pain management and a neurosurgeon. I just have to wait for all that to happen.


I know it is very late/early and many people will not be on. I do thank those of you who took the time to read this as I know it was extremely long. If I left anything out or you want to know more, don't hesitate to ask me. I am going to try to be around as much as I can because there is so much support here and I need it. Everyone here understand what I am going through so it is helpful. Thanks for everyone's time.

Kathryn
Posted 5/10/2012 2:31 PM (GMT 0)
Hi Kathyn and welcome to the chronic pain forum. I am sorry to read what an experience you have gone threw at such a young age. You really have gone through a lot of ups and downs along the way. That is so typical of chronic pain.

From the way things sound having a fusion is the only thing left. The fact that you are having so much leg pain is an indicator of nerve problems. I do know if a person waits too long in having the surgery the nerve damage can become permanent and you sure do not want that happening. Granted surgery is not a 100% guarantee, but not all surgeries are a failure. Any idea how long it will be before Medicaid kicks in?

I can appreciate your boyfriends view on further surgery, but I think if the shoe was on the other foot he would not feel as he does. Leaving you wide open to possible permanent nerve damage by doing nothing is something you don't even want to consider I hope. You have a young child to care for and he is going to need his mom for a very long time to care for him. You already have some experience in the surgery arena so you have a good idea what all it entails. A friend of mine waited too long to have a fusion done and she walks with a permanent limp plus drags her right leg when she walks. She said she could kick herself for not having the surgery sooner.

I am sorry that you don't get much support from your boyfriend but a lot of people do not understand pain. The main thing is to do whatever it takes to get you on your feet. Since you are feeling depressed you really do need to get your dr to call you in something, Depression and chronic pain go hand in hand. Sometimes when we get the depression under control the pain lightens up a little too. I just hope you will do whatever it takes to get you in better shape.

Anyway, I wanted to pop on here and tell you hello and welcome aboard. Please take care of yourself....Susie
Posted 5/10/2012 2:49 PM (GMT 0)
Once you do get on medcaid, or can see a counselor then take your boyfriend with you
to a session and have the counselor maybe explain the difference between an addict and dependence
that would be a good thing and then maybe seek out marriage counseling for further help...
it's good you lost weight that can help...many many Prayers and well wishes to you...
keep us posted as we do care...and sometimes we do lurk around here late at night so
you can always check the chatrooms...
Posted 5/10/2012 4:24 PM (GMT 0)
Thanks! We actually got a letter today and while my bf and son were approved, I was not. I have no idea why and it seems that either he did not mention that our son was my son as well or we have to be married because our son has his last name. He said he was going to call them today and ask but has yet to do so. I am going to remind him in an hour or so when it isn't lunch time here in FL.

I would love to take him to some sort of counseling but I know he will not go as he doesn't believe in it. Things are really rough and there is so many other factors that I am not yet comfortable to share.

I really don't want to be stuck with a limp or dragging along. I would like to have another child in the future and need to be able to care for my son now as best as possible. As his (pretty much) sole caregiver, I need to be able to play with him and whatnot. There were some days where I could only lay on his floor while he played around me. Now I can at least play with him for the most part.

Thanks again for the support and I will definitely keep you all updated. I see how wonderfully supportive everyone is and how it seems to be a great community on here so I will be sticking around! I am good at giving advice, just not following, as I'm sure many are!
Posted 5/10/2012 5:04 PM (GMT 0)
Kathryn a lot of men are that way but do not let this stop you from getting help. My husband is one of those men. He had no idea that I was seeing a psychologist and I really did not care one way or the other if he went or not. I did this for me, not him. I needed help learning how to live with multiple health issues and make a new kind of life for me. You can only help yourself. There is counseling for people available where you pay nothing to paying a very small fee. There are a lot things out there to help people you just have to look for the help.

I hope you can get the Medicaid straightened out what a mess.
Posted 5/11/2012 1:16 AM (GMT 0)
Kathryn, I just wanted to welcome you to the chronic pain forum here. You've certainly been through the mill, but I hope you'll find plenty of support here as and when you need it.

Take care.

Laura
Posted 5/11/2012 5:18 AM (GMT 0)
kathryn I hope your able to get yourself on the medicle card one of my worst fears is that we will loose our insurance ...I am so sorry you bf is not very understanding ..it just makes the feeling of guilt for being in pain so much worse hugs to you on that..and taking care of a baby it like 10 times harder when the pain is so severe been there done that you know my pain was much less when I was pregnant too insnt that weird I am thinking that for me my belly pulled whatever is pushing on my nerve off of it or maybe pregnancy hormones I don't know ...I also hd gestation diabeties I didn't loose weight but I also didn't gain a lot either and my son was 9 lb 4 oz so my pelvis was sore but not my back and leg...after he was born my weiggt ballooned up to 215 lbs from pain and stuff I couldnot be active at all...now I am down to 151 my doc said that while could stand to lose 20 more lbs I am at a pretty normal weight for my heighth but it has done nothing to ease my back and leg pain ...I am glad you joined I think we can be very good support for each other I am also on the 50 mm fent patch and lay around and suffer for that 3 day it sucks but its nice haveing two days where I feel pretty good ...I am.really interested in what happens with your back so keep posting ...I still need to make my signature but I can only sit at the laptop for so long at a time ...so I do most of my posting from my phone here in bed :-(
Posted 5/11/2012 8:29 AM (GMT 0)
Hello and welcome to the chronic pain section of HealingWell.

This is a great bunch of people where you will find support and understanding and a great deal of advice.

I read through your entire introduction and felt so awful for you.  I do understand where you are coming from and have suffered the back pain flares on and off since I was about 19.  I generally only go back to the "major" issue when I herniated the L5-S1...which is what changed my life forever.  I wish I had taken care of myself better when I had the chance and could perhaps have prevented the damage I have now, but hindsight is 20-20.

Since you have been lurking for a while, you have a pretty good idea of how the site works.  Of course, none of us are Drs and all of us have opinions...same thing with the meds...some work well for some, others not so great.

There are definitely programs for people like you who need medication assistance and your computer is the answer for finding them.  I have found that the company who makes the med is the best start and then they often have links from there to additional legitimate med help sites.  I ise several assistance "programs" that are not based on income, insurance, or assets. Just go to the actual site for the name brand med and sign up. Many of the cards can be printed directly from your computer and can be used until the hard card comes in. 

When I needed additional meds and had to have a discussion with PM about it, I did my research and found out exactly which meds I could take (allergies...you understand), how much they cost, if they have a generic, how much the generic costs, and if they have a co-pay assistance program or coupon program.  I took all of this with me and he used it to help decide what new scripts to give me for extended relief.  The one you use does absolutely nothing for me, but I am getting a little help from the MSContin, Ultracet, Oxycodone, Xanax xr, and Robaxin.  I don't think the Robaxin is the best choice for me, but it is one of the very few that I can take and it has a low co-pay.

I did have the fusion and I no longer have the same intensity in nerve pain that you describe.  Other than that, my fusion was not a success and my pain is often out of control.  My daugther has been raised with the understanding that Mama simply cannot do certain things and that she can.  She and her daddy do things when I can't.  Also, she has empathy, which is something very few children of her age (12) seem to understand these days.  She understands pain, respects medictions, respects people who have medical conditions, and often finds ways to help others if she can.....all because she has a mother who needed her to understand.  She does not make fun of others because she understands and I beleive that is a very valuable lesson and a positive thing to come out of situations like ours.

Although most here have not had successful fusions, I do personally know people with great success.  I hope you will be one of those and can get you life back.  I also agree with getting help emotionally, because you're going to need coping skills if you have this surgery.  There is no shame in asking for help.

Anyway, this is way to long as an intro, but I wanted to welcome you on and give some support for you situation.

 

Posted 5/12/2012 4:55 PM (GMT 0)
I just wanted to say Im sorry for all your are going through and hope it gets better soon. :)
Posted 5/12/2012 5:27 PM (GMT 0)
Thanks everyone for the kind words! We put in an appeal to DCF so hopefully that will get me on Medicaid. I am so happy, though, that the baby has insurance again. I was so worried because his one year appointment is on the 21st and I don't have the $85 to pay for it.
I actually made it though day three (yesterday) okay until I gave him a bath... Then I was in pain again. He woke up around 7AM this morning and the pain was so bad, I thought I was going to pass out. Luckily, he took a bottle and went back to sleep for an hour, then played in his crib for an hour. By the time I got up again (after passing out a few times), I left much better. It hurts but it is manageable. I changed my patch at the point, tried a new spot, up on my shoulder. If we go out later, I am going to pick up some Tegaderm.
Since I've been on the Fentanyl, my arms from the elbow down, fall asleep at night, regardless of position. I had this when I was pregnant but I know I am not as I don't have any other signs. It isn't painful just terribly annoying and is making my right elbow hurt.

badreflux - I do lots of posting from my phone and actually made my signature from it. I think we could be good support for each other, as well. Keep me updated on you, too. Day three is the worst, I found some things that helped so far, though. I shower before putting on a new patch and do not shower again until the middle to end of the second day but I do clean up (sponge bathish, I guess)... Not getting the patch wet when it is fresh, makes it last longer. I changed my placement from my usual spots today so I will see how that goes... I taped down the edges of the patch with scotch tape and that seemed to help, so I am thinking getting the Tegaderm will definitely help. Hope that gives you some ideas!

RetiredMom - Thanks for the advice. I am hoping that the fusion and removal of the disc will help. The disc is pushing against the nerve on the right side pretty hard. My ortho and the PM I was seeing said that all of my pain is from the herniation and the fusion will solve it. I really hope they are correct, I just cannot wait until the Medicaid gets fixed. I am tired of hurting so bad. I don't know what I am going to do in the way of meds, the Fentanyl does give me two or so days of help (and I can sleep and eat, the best thing) but isn't as good as the BuTrans patches were (although I sleep better on the Fentanyl but wake up in more pain). The problem with the BuTrans was that the patches left marks that looked like scabs on my skin. I checked the Butrans web page and I didn't not see anything more than a basic program that does not work without insurance. I have a high tolerance to opioids (I have for as long as I can remember. Percocet 10/325s don't last more than 3.5 hours anymore) so they're trying all these other things... Hope when I get the Medicaid, if the surgery doesn't pan out, I can get a pain pump or something along those lines.

Thanks to everyone else, again. I hope everyone is having a low pain day, though.
Posted 5/12/2012 6:15 PM (GMT 0)
Kathryn, Tegaderm was a life saver for me with the patch. Some people only get two days of pain relief with the patch and some drs will allow the patient to change it every 48 hours. If you are having it so bad by day 3 then you may want to let the dr know its only covering your pain for two days.This happened to me and I did not realize what was going on at the time. When I went off the patches, I realized day 3 was pain and some withdrawals. My daughter said she was so glad when I was taken off the patch because she said on day 3, I was horrible to be around.

What was the reason given that your did not get Medicaid coverage? I cannot believe they did not authorize you too. Glad the little is covered, kids are easy to get coverage on.

Susie
Posted 5/12/2012 8:07 PM (GMT 0)
Susie - No clue why they didn't authorize me! The BF seems to think it's because we aren't married... I didn't see the letter but I'll go find it later this evening and look over it.

Can you tell me what your withdrawal symptoms were like? I want to know if I am feeling them... I am probably quite the b*tch on day three.. I know I was this morning when I came back to bed and Chris (BF) asked me what was wrong... I said (in nasty voice) "nothing, I'm fine and dandy!" He was not too happy and when I said sorry later, he told me it hurt his feelings. I felt pretty bad about it. He helped me put the patch on around 930ish and at around one asked me if I was feeling it... I laughed, told him it takes about 24 hours. He has since asked about three times what the point is. I finally told him that it lets me function normally and sleep for a few days! I think I finally go through to him about not being an addict. I told him that I'd rather have more consistent relief, no high and be able to sleep and eat than take pills, have more instant but short relief and a terrible stomachachey high.

Do you remember the first day (day two) the patch worked for you? I was running back and forth to the bathroom disgustingly nauseated. I hadn't eaten more than a few bites of food and a ton of water for the two weeks prior so I think a severely empty tummy was to blame... I missed eating so much! Especially because I've become quite an adventurous chef lately creating new meals for Scott, all thanks to Pinterest!
Posted 5/13/2012 2:31 AM (GMT 0)
Kathryn, I had sweats, chills, nausea, terribly irritable, on day 3 nothing could make me happy apparently according to my daughter, shakes, higher pain level, really weird feeling. It was not nice I can tell you that.

I do remember my first 2 days I felt great it was helping my pain.
Posted 5/13/2012 2:54 AM (GMT 0)
Just stopping by to let you know that you are in my thoughtts and prayers for everything you have been through.

 

Take care

 

Betsey

Posted 5/13/2012 3:41 AM (GMT 0)
Since being on the patch (fentanyl) I've noticed that my hands/fingers feel numb and tingly when I wake up (it feels like they fell asleep but don't want to come all the way awake, is the only way I can describe it) It used to happen more often when I was first on the patch and now doesnt happen so often but it is EXTREMELY annoying.

Putting the patch on my torso seems to work better for me than on my arm, both in sticking power and in "working" power. I just seem to get relief quicker when its on my side than when it was on my arm.

I don't get any withdrawl symptoms on day 3 but I definitely notice a decrease in effectiveness. I'm also using a "breakthrough" medication which in my case is percocet, so I'm able to get through the day but I try not to do as much.

Also, I want to say about a week after starting the patch I ended up throwing up or heaving about every 20 minutes for an entire 12 hours, I couldnt keep water down, although I made sure to at least drink something to have something to bring up. And every so often I'll get bouts of REALLY bad nausea like that where it's uncontrollable.

Overall the patch has done me more good than harm, so I think I'm going to try and stick with it and try other meds for breakthrough and maybe other dosages to get the best relief with the least amount of meds.

Also, welcome!!! I joined not too long ago and have found a lot of support and information here that I wouldn't have otherwise.

Anytime you need to vent, or rejoice this is the place for it!
Posted 5/13/2012 6:31 AM (GMT 0)
On day three, I get hot/cold on and off, feel awkward and I have quite a few more bowel movements than normal (sorry if TMI)... Other than that, I don't really have anything else.

Thanks Betsy!

LexiRae, I am chunky and am having the patch peel up on my torso. I wouldn't put it on my arms, though. When Chris put it on my back shoulder, he had me move my arm all around and put it in a spot/direction where it would not move or move very little. So far, so good.

Unfortunately, I didn't get out to get Tegaderm and Chris forgot it when he stopped at the store. I don't know if we will head out at all tomorrow.

Good night everyone and Happy Mother's Day to all us mommies! I am very excited for my first!
Posted 5/15/2012 4:00 AM (GMT 0)
I find if I put it on my sides...almost on my back/the edge of my back, it doesn't peel up, but if I put it on my belly, it does, I think it has to do with how much the skin/site moves. The back/sides are a lot "firmer" than the belly, even being skinny, stomachs move and scrunch up and twist and turn when there's any sort of activity.

Also, I've found that putting pressure on the patch for longer than thirty seconds helps, and sleeping on it helps too, I guess because its also putting pressure and helps the adhesive really stick.

The other thing I noticed was, if I shower right before putting on a new patch (making sure to dry off) then it sticks better, probably because there are less oils/residue on the skin. Also, putting it on the torso/back while sitting is better than standing, because if you do it while standing, your skin is taunt and when you sit it relaxes (especially if you slouch or anything) so then the patch unsticks itself a little bit and creases form.
Posted 5/15/2012 1:29 PM (GMT 0)
Thanks for all the tips! Wish that I would have seen them before I put my patch on at 1AM, an hour AFTER you posted this! I will have to remember for Friday! I wish I could easily move it but without the Tegaderm, not so much. I STILL haven't gotten the chance to get the stuff!

Also, I have no idea why DCF didn't approve me for ANYTHING, not even food stamps. I will be calling them today. I tried to log in to the site but for some reason, it wouldn't let me! I'll have to ask them, although since I am not the payee, I don't know if they will speak with me. I have a ton of other calls to make today, gah!

Hope everyone has a good day.
Posted 5/16/2012 12:00 AM (GMT 0)
I hate moving them, or if you have to lift up one side to smooth it back out....somehow after I moved the one I'm wearing now I was able to get it to re-stick, I think sleeping on it helped...as I slept on my side, the side I put it on...lol

Hope you're having a good day and that you got everything done you needed to do. Dealing with DCF can be tough, I was supposed to call them today too about my EBT (food stamps) and your post just reminded me! Oops. Oh well, tomorrow definitely.
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