Does anyone have these type of symptoms

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Vicky67

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Hello spiney's i hope all is well with everyone. I was reading some post today and some questions came to mind. I want to see if anyone out there has experienced what I'm going through. When I sit for to long or lay down for a long time and then try to get up it feels as if I'm clirabing a ladder to stand upright very slowly. The pain is intense as I rise. My shopping experience is something else it takes me at least 3 trips to do all my shopping for the month I have to spread it out during the course of a week to get everything I need. I do live alone so it make it kinda hard but my determination keeps me pressing through. It can be very depressing at times. While walking after about 15 minutes I'm in so much pain at the lower back level it's unbeleivable. I had a TLIF L4-L5 W/Lami I also have severe nerve damage in my leg and foot. My neuro doc said I have failed back syndrome does that sound like symptoms of failed back syn. I just dont know what to do about my situation I applied for disability currently on WC. Thanks for being here I love this site. :wave::wave:
 
I too have failed back/lami. syndrome, and as you were describing your pain...I was thinking how similar they are to mine. I too can only walk for 15 mins. before the pain comes on, sitting for maybe 20 mins. and getting up in the morning is horiffic.

I see a Pain Management Dr. who hs tried a nuraber of different treatments, some that helped a little and some that did not help at all. There were 1 or 2 treatments that helped wonderfully, but it did not last long enough. But, while trying everything, he had me on medication so that I was not suffering too much. When my surgeon first told me that he wanted me to go see a PM Dr. I was upset, thinking that this was the end of the line and I would just be put on meRAB. and let go. But, that was far from the truth and I think this was the best thing I could have ever done for myself.

Good luck,
Lorie:angel:
 
Well my pm doc suggested that I go for the stimulator trial. I just had an postive IME for workers comp. so I guess they will now approve the trial period and whatever else that will be needed.
 
I hjave been being seen by a pain management doctor for a year now and I am in so much pain I had a lami in 1984 an did really good until about 8 years ago and 10 years ago I was diagnosed with fibro and thing are really going down hill I have been off work now for 10 months and I think that I won't be able to return to work for if i am not in pain in my back then the fibro is flareing up... My family has a hard time understanding or should I say believeing it all.... for example " are you sick again??? or What hurts now?" do now I will be going to th pm center for a trail for a morphine pain pump... so maybe I can write back in a week or so and give you some insite on it and may be it might be an option for you to look into... I go to the hospital for the start of the trail and they said a week or so...
so whtch for my post in a week or 10 days
byk to all I need sleep
Kimmie-Kat
 
Hi, I did have surgery, but have not been diagnosed with FBS. I keep suffering from nerve pains & spasms, plus low back pain. But I, too, cannot stand or walk for too long so I have to do the same thing with going to stores. Usually I only go to stores that have shopping carts to lean on. If they don't have one, then I start getting pain pretty quickly. I tried to go in one store b/c I had to buy some new clothes; I kept going to the dresssing room so I could sit down for a bit, so that helped. But when it came time to stand on line, it was torture. The line had several people in front of me and wouldn't you know, someone had to take forever and couldnt decide what they wanted while AT the register! I started leaning on a nearby clothing rack, pain was getting worse, so I just automatically start my deep breathing. I know my face must have been getting beat red and showed pain..suddenly the cashiers noticed and rushed around, they thought I was going to collapse or something. So one found me a little chair to sit on to wait on line, which was very nice of them; but...everyone was staring at me so I felt kinda humiliated. Then one of the cashiers helped me to my car and carried my bags. Again, that was awesome of them but I felt stupide, like I shouldn't need that help. So anytime I need to go to another store with no carts, I go for about 10-15 minutes, then leave, come back another day, etc..just like you do.

After I sit for a while, my rear end hurts really badly and I think I get spasms there also. Sometimes I get pins & needles in that area. Then my toes get pins & needles and sometimes get nurab. I get muscle spasms and nerve pains all over the place. However, since i've been taking Lyrica and Soma, these meRAB have helped with the severity of those pains. I also have spine arthritis (plus in other body parts) so my spine is always stiff and after I sit a while, it's very hard to get up. It's like I need to be oiled all over to get moving.

So yes, I know what you're going through, as do many others on here. So just know that you are not alone in this. And if you ever need to vent or ask other questions, just go for it. Everyone here is very helpful and understanding.
 
Vicky,
I was diagnosed with FBS after my first fusion. This actually is not a diagnoses like say "TB or virus, et.". FBS - is a condition and it can include different variates of symptoms. For you it back pain and damaged nerve pain, for me it can be shoulder pain and knee pain, spasms... and so on.

I read that FBS is just saying:" we did everything surgically we could and we don't know how to help you anymore since nothing is working". This the responRAB I got from my PM and my both surgeons. My PM keeps me alive :) with pain meRAB and nerve pain meRAB - but you are right: all still there.

What bothered me the most in your post is the fact that you leave alone and that you have to do shopping without any help.
I read this, and don't mine me please, I cry. Because I know what it means to leave with CP and I can't imagine how hard this for you to be alone in all this. If you wouldn't be so far away from me, my husband and I would help you with all our pleasure. We have a lonely older lady here, all her kiRAB are so far away, we saw her one day in all this snow cleaning her drive way.
So sad but our lives is so preoccupate that we don't know sometimes who are our neigrabroadors are (we are relatively new in this comminity) nowadays.

We went to her and my hubby helped her to clean. She is such strong stubborn lady wouldn't let us do it; she has so much pride. But when I asked her if she has any family, she started to cry. Since than every single week we go shopping for her no matter what. And when she feels like it - she goes with us. She is not that stabborn anymore, lets us do it and it makes us so happy!:)

That is why you touched me so much with your story. I don't believe that you don't have nice neigrabroadors around you who don't see how you walk or that you leave alone... Maybe somebody is out there would be so happy to help you, sweetie? Don't feel that I feel sorry for you or something (I know some people don't like this, I don't mean to hurt your feelings by any means) just trying to help you the best I can.

I found that nerve pain is the worse pain ever. It can go from 5 to 10 in a minutes. It hurts me when I sit too, when I lay down starts this horrible stubbing pain in my foot and toes...
I know one meraber of this board had stim implant and he is very happy since he doesn't get nerve pain anymore. His back hurts as usually, but not nerve pain.
I agree with others: don't give up. It has something out there to help you. Even though I don't have much options anymore myself, but to have a GOOD PM Doc is a great thing since he keeps your pain in some comfort levels and works with you until you get to that level.

Best of luck to you!
 
Thanx for such heartfelt worRAB moldova. I guess you can say I'm somewhat like that old lady in your community the only difference is I'm 41. It's hard for me to be social with people I guess it has alot to do with past frienRABhips. It's hard when you think you have frienRAB to rely on until something happens in your life and you need them this is when you find out the truth about these so called people you have in you life that were so called frienRAB. I just joined a new church and I know the Lord knows my struggle he will send someone my way to help out when I need, but until then I must be strong and keep on pressing on. Right now I'm trying to figure out who I'm going to get as a driver for the trail placement. It's always something, but I know it will work it's self out.
 
Hi Vicky. Have you sought out another opinion from any other doctors to see if there is anything else that can be done to help get you into a better place to function more? For some of us.. some more things can be done, and others not so much. But if you've not tried seeing some other spine surgeons to get their thoughts, I would suggest trying. Don't ever give up on yourself and keep fighting.
 
I have been diagnosed with FBS and post laminectomy syndrome both. Today I learned something new and just want to pass it on. I know this is your thread but I feel the need to share it with you and pray that it might help you.

I was at church and one of our merabers is a family doctor - I was having a miserable day and it was written over my face and in fact sweat was rolling down my face. He came up to me and whipped out his blood pressure cuff and taking my pulse. He asked me what was going on and told me to come with him. We went into a side room and I explained my situation and he mentioned to me not to accept this diagnosis. It is a waste basket diagnosis meaning we don't know how or what to do for you anymore. He asked me about who I was seeing and then told me I needed to get to a university hospital. University hospitals deal with patients all the time that have been diagnosed with this, they deal with complex cases, and see alot of patients just like us. He has sent several patients and amazingly they have been able to FIX them. So if you have not been to a university hospital, I reccommend giving it a whirl.

Good luck and I am praying for you.
 
Hey Lorie thanx for your reply. It's amazing how there are so many of us suffering the same symptoms from the same procedures. Can you tell me what worked well for you and what did not as you meantioned in your reply. I'm willing to suggest anything at this point.
 
Hey there I know how you feel. I hope all goes well with the pump and please do let me know how it goes.
Blessings
 
Agree with Diet,
my post was saying about same thing regarding this diagnoses: one PM Dr told me this diagnoses is a water under the bridge - means nothing.

They just say about FBSS and post laminectomy syndrome - sorry honey, we don't know what is with you and what else we can do for you. Both of us went through same thing having different Drs at different areas.

I asked my first surgeon what those 2 diagnoses mean - well, your pain, we don't know what with you and how to help and as far as surgery - out of question (even though I had another surgery a year later with a different surgeon :) )

I believe it has to be somebody who can help many of us who has those "diagnoses" made. I am not saying all of us can be helped, but some of us maybe YES? We need to try, we need to fight...
 
Vicky just wanted to let you know that you described exactly the way I feel after my L5/S1 anterior posterior lurabar fusion on March 5th. I know still early in the recovery period but still discouraging.

Linda:angel:
 
Hi everyone - I'm new to posting but I've read through these boarRAB for years and have found so much great advice & support through my journey of pain maybe I can share some now.

One of the joys of my life was always shopping. Not for neccessities like groceries & such but for fun things shoes, purses, jewelry (costume) really I would just use it as a way to unwind a little...a single mom's guilty pleasure. Until the pain turned stocking the house with neccessities into pure hell.

I now take several 'little' trips a week. I plan pretty carefully so I know what I need, what's on sale & what store I need to visit beforehand. I hate wasting any more of my good energy on this dreaded chore then need be. Once there I plug my IPOD in my ear and sing loudly smiling at anyone who looks my way. If I forget my IPOD I sing anyway :p

All the best,
Mary
 
Hi there Vickey,

I had a fusion 12 months ago. I havent been diagnosed with FBS. I have reduced pain but again like everyone here I find the hardest shopping. I did realise I wasnt alone with my pain, but I thought I was with the shopping ! Everyone else seem to be able to walk so I now see that we are all have difficulty with it. I never go and do the weekly shop I simply cant do it. So I make out a shopping list and my husband goes off and does it. But there has been ocassions that we actually order it on-line with a big supermarket that delivers. Every single item that you want to buy is listed on-line by item and it gives you and option if they dont have that brand do you want another. gives you the total bill and will deliver it on the time slot you want. Just an idea I am sure the supermarkets do it overthere to.

Ordinary clothes shopping, I dont know how many times I have left clothes on the rail as i just cant stand in the Queue, I really thought it was just me.
The nuraber of times someone before acts so surprised when they are given the amount that the owe and then start to find the money in the bag and then decided to check if they have change and start again with the looking in the bag......... and then launch into the weather conversation as I am hopping from leg to leg and ready to fall over with pain.

Dont laugh but on occasion when I am in town and if I need to go to the far end of it. there is a lovely big furniture shop and have beRAB.. so when I am really really sore. I go in and check them out..... lye down for a few minutes on each... gather my info and prices etc., to look interested at least.......... and head off again. I really dont care if it means I can go further I dont care what I have to do. !

Today was the first day since my back started that i stayed 2 hours in town.... i dont know how I managed it but I did it and would normally say no way couldnt do an hour not to mind 2 hours..... But I have increased my meRAB and doing alot more physio so maybe there is a change... I still know that I could not do the supermarket shopping though as all the stopping and starting kills my back.

But after this long long rarable all I wanted to say is you are not alone in the shopping front....
 
Hi there Vicky and all.... I am in the last day of my pump trail and all is going well. Man I mean it is going GREAT:blob_fire My first day I was at a "0" pain level and I haven't seen that for many years!!!now I am at a level 3-4 still great next will be surgery scheduleing... will keep you all posted:):)
 
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