Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Symptoms Rapidly Increasing

lisa burekllisa burek Posts: 855
edited 06/11/2012 - 8:36 AM in Chronic Pain
Over the last few weeks my symptoms have been worsening, as well as new ones cropping up. I'm trying not to be upset but its hard.

More and more I am just on my couch or recliner and doing minor things hurts like heck. Now I am having spasms in my butt, some where I can't move for a few minutes. Walking lately gives me pain down to my knees and driving is causing hideous pain after 5-10 minutes.
Its just a bit unsettling how fast these new symptoms have come on.

My fusion for L5-S1 is scheduled for Jan. 2010 but I called the Surgeon's office to see if I can get in earlier. The only problem with going in sooner is that my husband has an extra part-time job until the end of December and hes my helper.

I don't know how I am going to get through a week of Disneyworld around Halloween, but I just can't dissapoint my kids, maybe it will be good for me, mentally speaking.

OK, thanks for letting me vent. I feel better just knowing that there are other spineys out there who can relate.


  • yes i understand ..what about your medication? what are you on? Oxycontin and oxynorm very good for bad pain could your doctor give you that?? worth a try with that type of pain cateyes is in the same kind of pain as am i ..there must be something ion the air!! all i can offer you is what you are doing ..recliner and rest ..sod everything else look after yourself ....have you tried a good TENS ? i wish i could be more constructive but if i could help any more i would be able to cure my own problems! take care Lisa
  • Thanks for replying, I know you are having a rough time lately.
    I'm on Vicodin, it helps take the edge off the pain. With 2 young kids I can't take too much though. After my first fusion I used oxycotin, worked great but made me a bit too loopy for long term use.
    In PT they used a TENS unit, I can't really recall how much it helped, but it is worth looking into.
    Take care of yourself, Lisa
  • you are a brave soul to attempt disney in the state you are in. I have 2 young kids, myself, and did the disney trip aug of 2008. And like you there wasn't an option of canceling. We had saved up for years to take this trip.....

    My best suggestion to you from my experience is to utilize the meds - and if they make you a little loopy - the best part - outside of having fun with your children - your responsiblities are few! Also, not sure what hotel you are staying at - but the hot tub was a life saver at the end of the days!

    I didn't take advantage of it - but some of the hotels have massage packages - perhaps this could also be an option. There were things that I opted out of - the roller coasters and so on...i would stand in line and then exit when it was my families turn. I was still able to be apart of things, but didn't need to make myself feel worse.

    I can say that I was able to make it throught the trip - glad we went but was glad to be home. I wish you the best of luck with everything. I can say also, my condition was not as bad as it is today...and yours....so it may be difficult for you. Also, the fantastic treatment you get from the staff at disney is terrific - utilize their services for those "rover chairs" is need be. From my understanding if there are medical conditions, you can get passes so your wait in line can be less.

    Please enjoy the trip - for us it was a one time trip - took years of saving - and the place was spectacular!

    I hope that I have helped. best of luck getting your surgery moved up.

  • I've been dealing with an aweful flare up too... I went and had some shots in the areas killing me and it has helped the last couple of days,but will wear off soon. This being inbetween pm drs is aweful, feel kicked to the curb, they need to get with he program.
    The new one got my files finally and is suppose to call today. I'm so excited!!! I just need something to get the edge off.
    What type of work do u do? I couldn't imagine having to get up and go to work, that would be the past straw i think. I think it's the change of season for everyone, cuz all the rain and cool front going on is exhausting me more than usual.
    I just want the normal pain back. I know I'll never he pain free again but sheesh, the drs
    Need to give me a drug for these flares!!!
    I can't imagine working again, I think that would be the end of the rope. And sooo soon after your surgery! It can take more than a year to recoop from surgery, and I think u went back too soon, what type of job is it? Is your boss supportive?
    I just couldn't, I tried after 9 months of my 1st neck surgery, but lasted two months because the second disk in neck went out, so I quit! I'm a quitter, lol... Not really funny!
    But I am at the point now that I can't push, can't suck it up. It's too overwhelming! And I am gonna birch and moan and vent, cuz I deserve and have earned that right. If someone don't like it, tough $"/!!!!! Walk in my shoes for a day, I don't have anyone around me that could handle this crap.
    just have to hang in there, for them kids !!!
    That's the only reason I'm still here, my kids are my rock. Without them, I don't know what the point would be!
    So sorry you and many of us with this flare up crap, have to make it through somehow!
    totally giving up us not an option. But I still can't believe your working with this... Good for you, but maybe you should give yourself more healing time.
    Good luck sweets!!! I'm thinking bout u! Hope your days ease up to a more bareable level!
  • Tell him exactly what you need to do for your family. If you are a little loopy at Disney, so what!

    I always get a little loopy at Disney :)

    Honestly, I was having some really bad days in the fall 0f 2007. We had our 20th anniversary trip to Hawaii, bought and paid for coming up. I went to my doctors explained the situation and the need for being able to get through it without mucking up the whole trip. My doctors increased my meds and the combination of meds and being in Hawaii made everything go pretty darned well. I pad for it later, but the trip went well.

    So, try and talk it through with your doctors to see if you can work out a plan.
  • Definitely talk it over with your doc. There should be some way to make you more comfortable while waiting on surgery. If the stronger meds make you loopy maybe you could consider taking them at night when it's not as big an issue and so your pain can be knocked down by morning and you can have a better day.

    Stay strong,

  • Thanks for your replies.
    When I booked Disney, a year ago, my back was in much better shape.
    Hollie, I don't "work", I'm a stay-at-home Mom to 4 and 7 year old girls. I don't think I could work right now.
    Thankfully my Dr. is good about prescribing meds, and getting a note from him about my situation is a good idea.
    Also, hot tubs!! I hadn't thought of that!
    Take care everyone.
  • Don't know why I thought u were working, guess I read your hubs works and by the time I got to the end if the thread I had a brain fart. Hope your able to get some relief for your vacation. And hopefully it will be fun and relaxing and helps take away from the pain.All the fun your kids will have will make it worth it all. I have a hottub and it's great. Need to get it cleaned up so I can use it. It's just too hot in the summer to get in, but with this weather change it's time to get it going again.
    Good luck to you!! Have fun and take care on your trip.
  • Thanks Hollie,

    I am also hoping the trip will be a nice diversion to the pain. I can suck it up for my kids, and seeing them have a great time is good medicine.
  • Good luck on your upcoming surgery, I know it's hard to wait, but it will be better having the help of hubs... Cuz you will need that. But get this trip on and enjoy it to the best of your ability! A scooter would be a big help, maybe if you don't have one there might be someway to rent one, that would be great for you with all the walking you'll endure. Don't know if anyplace rents them, but just a thought!
  • i went this summer and last to disneyland. both times we rented a motorized chair to get around. also a benefit of this is that you get to be first in line for all rides that you can go on. rent a chair and enjoy yourself. pain issues never have let me down. i still go places and enjoy myself no matter what is going on with pain. befor my first fusion. i was at disneyland and my sciaticia made me go to the bathroom every 10 minutes if i was walking, when i sat it was better, but i still went and tried to enjoy myself even if #2 was making it difficult. nothing will keep me down from trying to enjoy myself along with my family even extreem pain. by the way i have had 4 back surgeries, 2 fusions, one laminectomy, and one to remove hardware and i am on 40 mg of oxy 4 times a day with fenatyl lollipops 4 times a day also. so i do have extreem pain issues also
    go out, have fun and work around your pain. it is amazing how we can adjust with respect to pain
    good luck
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I hope somehow that you make the trip to Disneyworld but please be careful and don't push yourself too hard. Rent a scooter out there and don't forget to take your meds. It's too bad your surgery is not til January- that is a long wait. I'm sure your doctor will work with you to keep you more comfortable until then.

    PS Hollie, we're all entitled to have our brain farts- we gotta relieve the pressure somehow.. :D Don't worry about a thing O:)
  • Just wondering if you have had a chance to speak with your doc about your upcoming trip? I was thinking about you - and reading everyone's posts back to you.

    Disney is just such a wonderful experience to have with your children - your kids are at a terrific age to experience all that. Let us know what the doctor said - it is always best to prepare for what could happen before hand. Rathar then be in the middle of a situation and not even know where to turn.

    keep us posted,
  • lots of good ideas about meds and power wheelchair have been mentioned...only thing i can add is that airlines provide free wheelchair with attendant to escort you to the gate. you need to set this up in advance. it would help you retain some much needed energy.....pete
  • I actually got a call today from the Doctor's office. They are able to move up my surgery to Nov. 18th (2 months sooner). Its kind of freaking me out since there is less time to prepare, but then I take a moment and remind myself that I HAVE been getting ready, just in case an earlier date was decided on.

    My Dr. wants me and family to meet with him about 1 month before the surgery to discuss with them what to expect post surgery, so that is when I can talk to him about Disney, maybe get stronger meds and a note telling of my spine issues.

    Thanks for thinking of me!
  • Last year I had a pass to Disneyland and as much pain as I was in I still always went and came back with a smile. The way I think about it is that I could be at home in pain or I could be out at Disneyland with friends and family in a wheelchair and have more fun than being at home on my own. You can make it! Disney is just an amazing place to go and experience! :]
  • So sorry to hear thing are getting worse for you. I know how these flair up go....boy do I ever. Hope your Doctor understands and increses your meds.
    I know Dinseyworld is going to be rough but the faces of your children will make it worth it for sure. Do everything you can for yourself and enjoy.
    Sending a hug >:D<
    Patsy W
  • good ideas here, the wheelchair thru the airport sounds like a great one! The airport can wear you out just thinking about it. You'll have a great time in Disneyland. never been there myself, but I've heard it is awesome. You will make awesome memories with your children that you will have forever! Enjoy every minute and slow down and rest if you need too so you can enjoy more later! Slap Mickey for me, he left me for that minnie chick ya know.. HA-HA!
  • Did you have your appt with your doctor regarding your surgery and disney trip?

    let us know how you have been feeling and how things went - your trip should be coming up for you.

    was thinking about you today.

  • Hi Lisa,

    I'm in Orlando about 30 minutes down the interstate from Disney SO if you have to send out an SOS for a spiney friend -- just give a shout. The Disney area has very good medical facilities close by in case of any emergency you may have and Believe Me, these hospitals have seen it all (LOL!).

    Just PM me if there are any questions I can answer for you about the area.

    Hope you're feeling better real soon,

  • Thanks for thinking of me. Today was my Dr. appointment, brought Hubby and kids so he could tell them what will happen and how I will be afterwards for awhile. (He did have the girls leave the room for a few minutes to go over some things that might scare them).

    I told him about Disney and he said to have a great trip! (we leave Oct. 27) Told him my pain had gotten even worse than last time I saw him and he gave me a new prx. Told me I was not a complainer and that due to all of my damage I must have a high tolerance for pain. And here I thought that maybe I was a wussy girl!

    He said hopefully only 1-2 days in the hospital and 2 weeks until I can drive. Hope he's right. Thanks again for thinking of me, Lisa

  • It is nice to have the doctor sign off on your trip. I am sure that Disney will be a great distraction for your pain. I have learned over this journey...that if I can distract my mind, it can't read the pain messages. I may feel the pain later when my mind is not distracted, but it is nice to have the relief. And Disney is an overwhelming place for the senses to be distracted.

    What a validation from the doctor regarding your pain. It helps us so much emotionally to have someone acknowledge our pain and maybe even to comment like you doctor did....

    Just my experience, back to the mind being distracted...I know for me that I really need to pay attention to my pain if I am unable to distract my mind from it. For me it is a yardstick.....it tells me that I really need to help myself - because it is past that point of being able to distract myself from it.

    Have a great time...a week from today!

  • I sure hope/pray that your new meds will help you so you can enjoy this family time :)
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I'm glad you have a doctor that listened to you, I went to Disney this past March with hubby and our two youngest 2 3/4 years and a 12 year old. I talked with my doctor's office and they prescribed more meds for my trip. I did rent a scooter from a company that was off site, since I was afraid there may not be enough left to rent. That part worked out great we stayed at a disney resort and I parked that scooter in my room each night and rode on all of the disney transportation with it. They really are accomodating there. The positive side of the trip for me I felt like I had freedom, I was able to cover all of the parks versus when I'm at home I move pretty slow, I feel 80 and I'm 43! My biggest complaint was that we went at such a busy time of year, spring break, never again. It was so crowded and I did feel like people would act like I didn't exist and cut me off in my scooter, but that wasn't the disney staff, it was the tourists! My advice is to prepare yourself mentally also, accept that you can't do all that you want and just enjoy the little things, I remember buzzing around at 10:30pm with my little one on the scooter while the others went on a ride and I just took it in visually, beautiful place. I hope you get some pain relief and have a great trip. Oh yeah, I did stay on the scooter and was able to see some things quicker that way, but I honestly did it because if I had to stand in line I wouldn't have made it past the first hour...have a magical trip. momma
  • Lisa,
    Sorry your symptoms are increasing, I know exactly what you're going through. My symptoms have been worsening at a faster rate since December, it's really very disheartening. Disney may be a great shot in the arm for you, a boost for your spirits! I can say that Disney will take care of you, they have figured out how to accommodate folks and make your visit as special as it is for your kids.

    Hope you have a great time!
  • Thanks for your well wishes, I truly appreciate them.

    Jay, I have been following your posts and am hoping for some kind of resolution and relief for you. It must be very frustrating for you.

    I am hoping that the trip will be a pleasant diversion for my pain, so much to see and do....even before going I have all the packing to deal with, another distraction, good.
  • I'm happy to hear you were able to get your surgery scheduled sooner. As for your Disney World trip, I would suggest renting a wheelchair as soon as you get to the parks each morning. I go there at least once a month and since February this year we've taken a wheelchair with us as my boyfriend was in a bad accident and it's quicker to get around the parks if I'm pushing him than for him to walk with his cane. The last time we went, I was in more pain than he was so for a while he pushed me around the park in the wheelchair and it helped. If you decide to give this a try, just make sure you bring 1-2 pillows to sit on to help put a little cushion under your butt. You might find yourself walking half the day, but at least you'll have the chair as a backup.

    I will actually be there this Sunday. I don't know when you were planning on going, but if you will be at the parks this Sunday and want an extra hand, we'll be more than happy to help you out. Just PM me for my contact info.

    Good luck!
  • Sorry to hear that you are having such a tough time. Recently my doc changed my meds to Oxcynorm, Oxcycontin and Valium. He then said that sometimes by changing the times that you take the meds can be helpful with the "brain-fog" issue. He is monitoring me closely, and I appreciate his suggestion. So far it seems to be helping me, maybe worth asking your doc about if it may help you. My TENS machine and heat pack and lumbar support also help with getting "comfortable".Good Luck with everything, big gentle hugs n' Loves - Paula
  • Thanks for all of your input and well wishes. I have my cane with seat, can rent w-chair or evc.

    My husband has also said that if I am having a rough day and just want to rest, he'll take the girls out by himself. Thank Goodness for a supportive family (and SH friends).
  • When you tell a surgeon that you need pain meds so that you can go to Disney, you send up red flags everywhere. It's one thing to need meds to go to work, but do you really need to go to Disney now?
    I missed a planned vacation to Myrtle Beach in 2004 because I needed spine surgery in August and couldn't drive that distance. It was hard telling my kids, but they understood and there was the next year and many years after that.
    By taking care of yourself first, you are taking care of your kids. They need healthy parents.
This discussion has been closed.
Sign In or Register to comment.