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Old 12-31-2011, 11:34 PM   #1
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I am new here and trying to find people who I can relate to.

I found these boards and I joined in hopes of having people to relate to. So many people dont understand my pain and often I am called a hypochondriac or seen as a weak person. My husband and parents are the only people who understand my pain but coworkers do not and I have lost many friends who do not understand why I can't go to the movies (because it hurts to sit that long) like a normal 25 year old. I can't run, jog, do any activity that I could further injure myself. I can't bowl or skate or even clean my bathtub. I get so depressed that I cry until I have a migraine and feel like my life is not even worth living. I have had injections that only made me worse and PT that did nothing. I feel lost and alone. I feel like I have an 80 year old body but I am only 25. I can't even carry a child because it would ruin my back! I can't give my dogs baths because theyre too heavy and I can't bend over to pick up something I have dropped. Does anyone understand my pain??

 
Old 01-01-2012, 05:51 AM   #2
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Re: I am new here and trying to find people who I can relate to.

[QUOTE=smokeandmirrors;4902395]I found these boards and I joined in hopes of having people to relate to. So many people dont understand my pain and often I am called a hypochondriac or seen as a weak person. My husband and parents are the only people who understand my pain but coworkers do not and I have lost many friends who do not understand why I can't go to the movies (because it hurts to sit that long) like a normal 25 year old. I can't run, jog, do any activity that I could further injure myself. I can't bowl or skate or even clean my bathtub. I get so depressed that I cry until I have a migraine and feel like my life is not even worth living. I have had injections that only made me worse and PT that did nothing. I feel lost and alone. I feel like I have an 80 year old body but I am only 25. I can't even carry a child because it would ruin my back! I can't give my dogs baths because theyre too heavy and I can't bend over to pick up something I have dropped. Does anyone understand my pain??[/QUOTE]

Welcome and Happy New Year , your story sounds a lot like mine ,only I am much older than you, my problems begn when I was about 11 years old, no one can truly understand another ones pain ,there are a lot of really nice people on this board that would like to help you with moral support and maybe offer some suggestions that might help you, what is your particular back problem, you sound like you could also use some support from the depression board also , please report back

 
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Old 01-01-2012, 07:37 AM   #3
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Re: I am new here and trying to find people who I can relate to.

It is hard that we have to add the lack of understanding (and the DOUBT) on top of our pain. I'm glad you at least have a supportive family....that's so helpful (says a gal who spent many years w/ a guy who questioned it). You'll find folks here "get it"....and that there's something lovely in being understood. Folks here know how challenging the littlest thing can be (like why it takes me a few minutes to pick up the case of soda cans and put it in my cart) and how much WORK living with pain is. It is tiring...Evil Ex did NOT get why i was so tired...i wanted to kick him in the low spine every two minutes and see if he got tired. And it feels lonely....

BUT you are NOT alone. Folks get it, folks understand. For me this makes it a bit easier...knowing others are out there batlling forward.

I'm 34 but was hit w/ chronic pain in my early twenties from other sources. I want to slap everyone who says "But you don't LOOK sick"....and those who made comments when i went through a job loss and divorce and they'd reply "Well, at least you have your health"...ummm, NO!

Ok, now I'm ranting. Point - We get it.

Come rant and rave. Come ask questions too since there are folks with every diagnosis (and no useful diagnosis but pain) imaginable...we aren't doctors, but patients have great insight on how to live with the stuff and thoughts on diagnosis and treatment from our first-hand experience. We get how frustrating it is for your body to refuse to do what it should and how tiring it is to fight it every day.

I hate that all these lovely folks have pain and troubles, but I am glad to know it isn't "just me"....it is a comfort.

 
Old 01-01-2012, 10:44 AM   #4
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Re: I am new here and trying to find people who I can relate to.

thanks for the replies. I feel better knowing there are others with chronic pain. It does tire me, I am ALWAYS tired. Taking Soma and Lortab sure doesn't help with that either. I have to carry a wal mart bag of RX bottles with me to work everyday and some call me the pill popper or 'the pharmacy' and I just laugh it off because I know they dont mean to be hurtful but it is. I would give anything to NOT have to take these pills just to BE at work and be able to move around.
People also tell me 'I dont look sick or injured' which I don't understand why people think I would look injured or sick. And concealer covers up the huge dark circles under my eyes from being so dang tired and worn out all the time. I went to a new Years party last night and by 12:30 I felt like collapsing. I slept ten hours and I am still worn out and hurting from standing and then sitting on couches that were too squishy.

I forgot to add what my back problems were, in 2005 I suffered a severe L4,L5 herniation and a year ago developed job related Thoracic Outlet Syndrome

Last edited by smokeandmirrors; 01-01-2012 at 10:54 AM.

 
Old 01-01-2012, 10:51 AM   #5
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Re: I am new here and trying to find people who I can relate to.

I forgot to state what my back problems were. In February of 2005 I suffered a severe L4, L5 herniation and had a steroid epidural injection a month ago that made the pain 10X worse. I now have extremely bad sciatic pain in my right leg/hip/bottom area every day. My back has been "going out" more than it used to which causes me to be bed ridden for at least 3 days and need help getting up to go to bathroom and missing 3-4 days of work.

Second problem is Thoracic Outlet Syndrome, I was hairdresser for 4 years and last year I started experiencing a lot of pain in my collar bone, chest, shoulder blades and neck that radiated down my arm to my pinky and ring fingers so after months of seeing different neurologists I was finally diagnosed with TOS and went to 7 months of PT which helped only a little. Soma and TENS unit keeps it livable but I can no longer do hair and many other activities.

 
Old 01-01-2012, 01:31 PM   #6
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Re: I am new here and trying to find people who I can relate to.

Welcome to the board. We are happy you found us and hope that you will feel comfortable here.

Cheryl did a great job of covering how we all have felt at one time or another. I won't add to it.

I was going to ask what is the cause of your spine problems, but I see a brief mention of it in your last post.

What types of treatment have you had? Did you have surgery for the herniation? What types of treatment are you having currently? Sounds like it is mostly pharmaceutical. What type of doctor is currently treating you?

 
Old 01-01-2012, 07:10 PM   #7
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Re: I am new here and trying to find people who I can relate to.

I have only had PT and an epidural steroid injection. I'm going to make an appointment with a different orthopedic doctor soon because the injection made everything worse!

 
Old 01-02-2012, 12:00 AM   #8
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Re: I am new here and trying to find people who I can relate to.

Then you didn't have surgery for the herniated disc? Do you know if it has resolved, or is it still causing problems?

Have you been in physical therapy for the thoracic outlet syndrome, or how is it being treated?

When you choose a new orthopedic surgeon, be sure it is a fellowship-trained ortho spine surgeon...one who limits his/her practice to issues of the neck and back. Experience and education are especially important in a spine specialist.

 
Old 01-02-2012, 12:09 AM   #9
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Re: I am new here and trying to find people who I can relate to.

I too just joined the board today. I have been dealing, living, experiencing, call it what you will, chronic pain since my disc rupture on 12/8/10. The pain is in my foot and leg so that I can't walk or stand without pain the pills only make it tolerable. People think I have a bad ankle or suggest I try their chiropractor because I am probably out of alignment. Ha! I am searching for answers since 4 surgeons in they don't know what to do. Stay in there and get an anti depressant. I used to cry 2-3 times a day from pain and frustration. Now I don't. Good luck and happy new year, we'll beat this yet!

 
Old 01-02-2012, 09:07 AM   #10
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Re: I am new here and trying to find people who I can relate to.

I had physical therapy for the herniated discs in 2005 for 6 months, felt better and was able to walk but never felt 100 percent and became used to a level 1 or 2 pain and sometimes on bad days a 3. Last year I did a stupid thing, took my dogs to the dog park with hubby and attempted to jump the dog hurdles, I didn't jump high enough on the last hurdle and knocked my shin on it and went tumbling on the ground, a few days later my back went out pretty bad and ever since I have been in constant 5-7 pain on the pain scale and then I got the injection and its been a 6-8 CONSTANT pain.

I went to PT for the TOS as well which made it tolerable and SOMA has helped so much with that as well as my tens unit but still bothers me enough when I try to paint or sketch or even type to much! ha!

I have had people tell me that if they were in my situation they would just work through the pain instead of quitting their hair styling job. really? if you were in unbearable pain and you were losing function of your hand from TOS and dropping your scissors on clients you would just work through it? People do not understand and that is the most frustrating part of it.

 
Old 01-02-2012, 09:46 AM   #11
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Re: I am new here and trying to find people who I can relate to.

Talk is cheap. People do not understand how excruciating the pain can be.

Have you had a MRI since you fell at the dog park?

If you are a stylist, the TOS may be an occupational hazard. There's something about holding your arms out like that all day long that is tough on the spine. The man I went to for years had to quit the professional when he developed carpal tunnel and some sort of shoulder issue, and was told not to lift his arms out from his shoulders any longer.

And of course, with any lumbar issue, standing is usually really painful.

How long ago was the injection, and did you just have one?

 
Old 01-02-2012, 05:21 PM   #12
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Re: I am new here and trying to find people who I can relate to.

I have not had an MRI since the dog park but I am thinking I need one! I had the injection a little over a month ago. :-\

 
Old 01-02-2012, 07:03 PM   #13
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Re: I am new here and trying to find people who I can relate to.

PUSH. Sometimes only the patients who keep pushing get the answers. ASK questions and TELL them every concern you have...none are too minor. DEMAND a plan of action....for me, it helped to spell out steps we'd go through to try and use non-surg treatment first but that did eventually lead to surgery. Some docs get frustrated...I guess I understand it...they are supposed to be able to find the cause and sometimes that is TOUGH, esp in backs. if you don't get progress, get a new doc....Dr Dad says he welcomes a second opinion b/c it brings a second set of eyes. the one doc who happens to know the right fix for you may just not be the first you visit....

Don't settle. So learn to cope and live with where you are, that's hard but important. But DO push for answers. No one else can do that part for you...and just doing it can (for me at least) be a bit of a reilef...i feel better when i know i've truly tried.

Side note: You know you are a back-buddy when the silliest thing lands you in horrid pain. You just wanted to play in the park. A few weeks ago, a tough door at a chinese restaurant left me on the ground and then with an added sprain on my post-op lower back. It's def not a fun part of our world, but we can all relate

 
Old 01-02-2012, 08:28 PM   #14
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Re: I am new here and trying to find people who I can relate to.

I too have had a hard time trying to get my family to understand I can't do the same things anymore, ther keep ignoring me, so now I just say ,I'am busy ,they seem to get that , I am putting all my energy into trying to live a better quality of life ,so I can be here for my grandchildren who do care but are too young to help me , if you are a hair stylist and make a living doing it and its hurting you ,that's a very strong case for disability ,I used to document all of my symptoms and restraints in a diary so I could tell the doctor

 
Old 01-03-2012, 04:15 AM   #15
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Re: I am new here and trying to find people who I can relate to.

[QUOTE=smokeandmirrors;4902395]I found these boards and I joined in hopes of having people to relate to. So many people dont understand my pain and often I am called a hypochondriac or seen as a weak person. My husband and parents are the only people who understand my pain but coworkers do not and I have lost many friends who do not understand why I can't go to the movies (because it hurts to sit that long) like a normal 25 year old. I can't run, jog, do any activity that I could further injure myself. I can't bowl or skate or even clean my bathtub. I get so depressed that I cry until I have a migraine and feel like my life is not even worth living. I have had injections that only made me worse and PT that did nothing. I feel lost and alone. I feel like I have an 80 year old body but I am only 25. I can't even carry a child because it would ruin my back! I can't give my dogs baths because theyre too heavy and I can't bend over to pick up something I have dropped. Does anyone understand my pain??[/QUOTE]


I was in the exact situation you were. I JUST turned 22 and last spring, I herniated my L4-L5 AND L5-S1 discs, severely, causing extreme sciatica. I had two microdiscectomies on Christmas Eve, and I feel amazingly better. My parents wanted me to come home to New York, for the surgery, so I am currently in NY, but I live in Savannah, Georgia. I used to go to school, walk or ride my bike everywhere and be able to go out to bars to see friends bands preform, etc. and suddenly I couldn't walk anywhere, not even half a block, I couldn't stand for a bands full set, I'd have to sit or cower in the corner if no seats were available. I had to quit art school in the middle of a semester with but a year to graduate. I've taken cabs less than three blocks distance many times before. Its terrible.
I haven't lost a lot of friends, but I only have a handful of friends who have been able to "understand my pain." Any of my friends in their 20s, seem not to understand, but most of my friends in their 30s and 40s have had friends or personal experience with herniations, so they were great to relate to and catered to my pain in any way they could. But people my/our age cannot relate one bit what so ever and just get frustrated with me. They don't get how painful it is. I used to not drive, so if I went anywhere with people (the park, downtown for a walk, shopping, etc) I would have to suck it up or call a cab to pick me up or be a bummer and make people cut things short. A lot of my friends just started leaving me out of things after a while. My older friends and boyfriend understood much more because of personal experience and I think their age and ability to see the importance in certain things over others. It was really hard for me though, living in a very lively, historic, but artsy city, not being able to do many activities. I've cried on the phone to my mother many times, or have been up crying in so much pain I've woken up my room mates. It is really difficult, I sympathize with you, completely.
I tried having the 3 cortisone shots. The first one seemed to help, the second one made little difference, and the third shot made things worse and was completely debilitating.
Two months later, I tried going to the chiropractor and seeing an acupuncturist. Chiropractor just kind of made me feel good when they massaged my muscles with a special machine, but they wouldn't really touch my spine, per se, because my case was ridiculous. The acupuncture (which I've tried for other reasons before and never hurt), cause me extreme pain and anxiety. Needless to say, I quit doing both of those.
I was told not to do physical therapy at the beginning because my MRI was so terrible, but a doctor I saw this summer suggested Inversion with minor psychical therapy. It seemed to make things hurt much worse.
In September I was scheduled for the microdiscectomies since that was basically the last option, no "conservative" methods were helping me, only hurting me. They cancelled my surgery because my white blood cell count was so high and we rescheduled, same thing happened, over and over. I was even more depressed than ever. I was away from my friends and life in Savannah and no one could figure out why I was so sickly and I couldn't be operated on. It took them from August until two weeks ago to figure out I had two cases of pneumonia that heightened my white blood cell count, that was over looked. They finally operated a week and a half ago, and I feel AMAZING.
I have a hard time sleeping since I am a stomach sleeper and that is a "no no" and the wound on my back is a little sore so I cannot sleep on my back. My legs hurt a little from sleeping on my sides and my ankle and bottom of my foot are a little numb, but that is improving daily. My joints and muscles in my right leg(the leg with sciatica) are often sore and I have to massage them with icy hot or some other cream since I favored my left side and I've been limping or avoiding using my right side for 11 months or more. That is a little irritating, but soooo much better than before the surgery.
In two and a half weeks, my boyfriend is flying into New York from Savannah, and I'm just hoping I'll be able to walk around enough to show him a nice time. I know he would be more than delighted just to stay in with me but I really want to be able to be in a state of doing minimal, but "every day" kinds of exercises by then like walking around the city, even if it is minimally and being able to stand at museums, etc. We bought over priced Radiohead tickets in Atlanta and planned a trip to Nashville to celebrate my recovery all throughout the month of March, but that was before my surgeries were postponed, so I'm hoping this New York trip will kind of be a dry run for our vacations we have coming up to celebrate my recovery since we have been through every stage of ups and downs together.
I've had this problem since I was 17 and had flare ups until I was 21, thats when this big, bad case hit and I underwent surgery. But all the flare ups and initial disc herniation I had in my teens went away with psychical therapy and rest. Eventually I guess it gets out of hand and PT can't do wonders anymore.
Are you considering surgery at all? or are you trying to stick to as conservative of measures as you can?

If you ever need someone to talk to, I am definitely here. I've been through minor back injuries to truly debilitating ones and I've around your age, so if you have any questions or need someone to relate to you can always contact me.

 
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