PDA

View Full Version : i wish the pain would go away



Smiley
08-27-2004, 05:12 PM
Hello my name is Shirley AKA Smiley.. Well not to much that anymore.. I am 23 years old and i have some form of scoliosis. The Doc says that i have an S curve. I have a 25 degree curve on the top and a 45 degree cure on the bottom. I am in pain most all the time. It never goes away. But since i have had it for so long i have learned to cope with the majority of the pain..But sometimes it is just to much.. I am right now looking for a new Doc. because mine just wants to keep running me around in circles.. He says that my back isn't going to get any worse than it is now.. That the pain is all in my head and that it isn't nothing that i can't deal with.. I told him to step into my shoes for a day and see how he likes it..

derxz
08-27-2004, 11:24 PM
i also advise you to have a second opinion. good luck, the pain sucks. i had corrective surgery, 3 years ago, and 4 weeks ago i got in an accident and compression fractured my L2. this pain is so much worse than any scoliosis pain i've ever had.

kdawn
10-05-2004, 03:21 PM
I know how you feel. I'm 31 and for the past few years the pain seems to be getting worse. I too have learned to cope but there are some days that I just can't stand it and lately those days are 5-6 out of 7. One doc told me to come back in 10 years. One doc said I probably will need surgery and sent me to a specialist. The specialist didn't seem to worried and told me I did not want surgery and basically to learn to deal with it. If you find any answers to the pain please let me know.

Freefalldog
10-17-2004, 04:30 PM
I am just beginning to learn about this. I am in my thirties and was just recently diagnosed with double s curve... I was told that there was not much that I could do, but go to physical therapy 3 times a week to learn exerises to strengthen my back muscles. I work full time and have children and no medical insurance to do any of this... Is it true that this is my only option? I am noticing pain more and more and sometimes you get so used to it that you become numb... but when the weather changes it can be pretty unbearable. I can totally understand where you are coming from in wishing that the pain would just go away...

JERALYN
10-28-2004, 11:15 AM
LOOK FOR A DOCTOR WHO WILL TAKE ACTION TO HELP YOU DEFINE YOUR PAIN. WHEN I WAS 16 I HAD T-2 TO T-11 FUSED. WHEN I WAS 23 I COULDN'T FUNCTION DUE TO PAIN AND MY PHYSICIAN ADVISED ME TO "EXPECT POST-SURGICAL DISCOMFORT". 6 MONTHS LATER A SECOND OPINION REVEALED I HAD BROKEN L-2 AND NEEDED FURTHER FUSION TO S-1. UNFORTUNATELY, ALONG WITH THE "BAD BACK" EUPHEMISM COMES "IGNORANT DOCTOR". AGAIN IN 1996, I WAS SUFFERING FROM EXTREME PAIN, FOOT-DROP, LEG LAGGING, I WAS ON A SCIATIC BATTLEFIELD, SEVERAL MDS REFUSED TO ADDRESS MY SITUATION BECAUSE OF MULTIPLE PRIOR FUSION FAILURES. HOWEVER, ONCE EXAMINED IN THE OPERATING ROOM, IT WAS TWICE DISCOVERED THAT MY AUTOGRAFTS HAD FAILED AND ALOT OF MY PRIOR FUSIONS HAD DISSOLVED- INCLUDING ANTERIOR DISK FUSIONS. UNFORTUNATELY, X-RAYS DON'T TELL THE STORY AND SOME RADIOLOGISTS WILL NOT PUT THEIR SIGNATURE ON A QUESTIONABLE DIAGNOSIS BECAUSE THEY'RE AFRAID OF BEING SUED SHOULD THEY BE WRONG ABOUT THEIR ASSESSMENT.
PURSUE COMFORT. THERE ARE ALTERNATIVES TO EVERYTHING IN LIFE.

butterfly46
10-28-2004, 08:53 PM
Smiley I feel for you. I know the kind of pain you are going through and for that doc to tell you it all in the head, I would ask for his credentials. Perhaps he studied medicine on MARS! My advice is to seek an Orthopedic Specialist, look at his credentials, look at the wall of office and see where he practiced, with years of experience, that way you know you are getting professional help. Take care.

Butterfly46

marciedv
11-01-2004, 11:13 AM
Is the pain that everyone is feeling almost like BAD lower back labor pains??? it feels like if you just stretched or bend just right it would relieve the pain? BUT IT DOESN"T
I am 23 and just be told that I have scoliosis on 10-29-2004.

marciedv
11-02-2004, 08:38 AM
Did anyone have pain that just started all the sudden one day, or was the pain something that come on over the course of time?

scoliosisguy
11-05-2004, 10:14 PM
I'm 38 and my pain for the most part came on out of nowhere. I think the curve must have curved little more ,enough to cause disc to bulge out. I didn't know i had scoliosis before that.

Danite
11-08-2004, 12:17 PM
Goodmorning or evening, what ever.
I sure can relate to this forum, pain is something that is adjustible or manageble for most of us with scoliosis, it is something that we must do, it becomes more tolerable to handle as our experiences with scoliosis grow. But at the same time it is a very individual thing, and we all have different pain level or tolerant levels for pain. I have found out that my abilities to handle or deal with the increase pain has decrease over the years because of the degerative or progressive of my scoliosis and now I require stronger pain medication. It has also restricted much more of my daily life activities, including work this assists in pain control at a tolerable level but it does not eliminate it. I guess what I'm trying to say is your not alone, and many of us understand, also the discomfort and inability to sleep thru a night is frustrating without waking up. I have had my scoliosis for over fifty years now, had major surgery that fused 80% of my spine at the age of four, no rod, no metal parts. The pain has been increasing since 1990 and I have lost two great jobs because of it since 1990. The most recent was this year and now I'm applying for SSDI, but I will not stop fighting or give in.
My fight now is for SSDI and my benefits, if it is not the pain, it is the system. God Bless.

sane333
12-02-2004, 01:30 PM
Did anyone have pain that just started all the sudden one day, or was the pain something that come on over the course of time?

My pain developed over time. But that's the constant pain.

I started getting extreme pain episodes when I was about 18, maybe a little earlier. It's tough to remember. But, I can hardly stand the pain from them. It floors me it hurts so bad. My doctor had told me it was muscle spasms, but it sends shooting pain down my arms, which leads me to believe its nerve pain, not muscular.

suzyq728
12-02-2004, 02:02 PM
My pain came kinda little by little. I had surgery back in 1972 for a 68 degree S curve, with the Harrington Fusion. I am 47 years old now.

After the surgery I thought all my problems were over, and at that age, I just wanted to forget about the whole ordeal, which I managed to do well at 15.

Today however its a whole different story. I wake up and pray I will be able to stand up straight, then I stand, and pray for a pain free day.
What used to take an hour to do now takes maybe 3 or 4 hours. I used to run and play with my grandchildren, now I watch them run and play.
At first the pain started in my lower back, just a annoying pain, that I dealt with. It did get worse as time went on. I was working as a retail manager always on my feet, so that didnt help. I finally quit my job cause I was in so much pain. Once off my feet for a while I felt a little better. The pain was there, but not being on my feet constanlty all day made the pain tolerable.
But, I have children, I have to survive, I did apply for SSI benifits, was turned down, so back to work I went. I did what I knew, I worked on my feet, until 3 years later, I could not take the pain another day. Quit another job, and for the past 3 years I have also been fighting the system.

Here's to better days........:)

Danite
12-02-2004, 02:53 PM
It is very frustrating that I can no longer stand long enough to do the dishes around the house or vacuum the carpet without sitting down. But even the sitting will cause me to get back up, my wonderful wife sometimes don't understand why I can't do this or that. I don't blame her for not understanding, after all these years of being pretty active and now this, I have slowed down a lot and it is very alarming and frustrating. The pain is sometimes very sharp and hard, no pain medication in the world will help, and this does not include the breathing problems which is really scary.
I did get approved for Social Security Disability INcome, guess thats somewhat bittersweet news. Keep in touch and God Bless...

suzyq728
12-03-2004, 06:46 AM
Hi Danite
I hear what you are saying. My son, who is 20, still does not understand why I cant put the BIG Christmas tree up, nor give the dog a bath. He has expressed to me his concern about me not being able to do much of anything anymore.
I am trying very hard to make him understand, and not alarm him at the same time, which is hard cause I myself get very nervous.

How on earth did you manage to get threw to Social Security? I have been fighting for 4 years now. But I refuse to give up now.

Have a great weekend:)

Danite
12-03-2004, 12:28 PM
It is a difficult thing that we must do, part of me is very private and all my life I have fought for inclusion and stay highly active in life. Playing hard and fighting to get ahead, financially and educationally, but as you know the system is not far, and we all must fight for our rights. Because of this and after fifty some years it is difficult for people to see me this way, I'm tired but I'm not dead.
Because of the last few years, I have seen my condition deteriate to an alarming point. After my last MRI and a couple thousand doctor visits, I thought that now would be the time to apply for SSDI. Everything that I have, medical records, visits, medication and long, long history of Scoliosis supported my application. Since I was working full-time and have good disability insurance I figured that now was the time for a try at SSDI.
I was expecting a denial, because almost 60% of all first application are denied, and was surprise to get it on my first try. Like I said it is bettersweet news, at least my finances are pretty good at this point, but I would trade it in for a normal life.
Keep fighting, Good luck and God Bless...

dufay
12-17-2004, 01:51 AM
I have an S curve, also. I was interested to read your posting, because it was at about your age (22-23 yrs) that my back became such that it was almost intolerable. Some days, I couldn't move because of the pain and would have to spend entire days just lying down. I felt that there was nothing I could do about it and got quite depressed. I was only in my early 20s and its seemed that I would be stuck with this pain (which was getting progressively worse) for the rest of my life.

Anyhow, I went to a physiotherapist and was told that nothing could be done and -in particular - that I shouldn't risk aggrivating the problem. My boyfriend, however, was into weight-training and persuaded me to try very (and I mean VERY) light weights. I figured I couldn't make things much worse, as the pain was often terrible already, so gave it ago.

I have never looked back. While I have to be extremely careful about what exercises I do, I now rarely have back pain. Sure, if I sit wrong or do something stupid -say, like lifting furniture without correct technique - I can very easily strain my back and be in pain for a day or two. Typically, however, I now only get the usual aches that one expects from this condition. I think that this is due to a combination of things. Firstly, I have gained muscle on my back and torso -this has clearly helped with my posture and I find it easily to hold-up my spine. Secondly, I really do think that it has helped correct the curve a little - or at least, take some of the pressure off those areas that were particularly messed-up (like my ribs, or under my right shoulder-blade). I have actually gained nearly an inch in height.

I combine the weights with yoga and other sports that help develop my back (climbing is particularly good, as this relies mainly on leg strength). It's a constant battle, tho, as I seem to be very prone to losing muscle-gains that I have made on my back. However, I really am now stronger than most other women that I know!

If you want to talk more about all this, please feel free to contact me. It has taken me years to learn what is best for my back /what to avoid. I can't say that exercise would work for you, but it has certainly changed my life.

bluestone
09-04-2008, 04:28 AM
Did anyone have pain that just started all the sudden one day, or was the pain something that come on over the course of time?

My pain has gradually got worse with age.
I was diagnosed at 22, Im now 42 and I can honestly say my pain has doubled-just like my curve, gone from 30-60 degrees.
Im seeing my specialist again on 10th Sep about my worsening neck pain but I want some answers as to why my scoliosis is getting more painful with age.