I think my scolosis is getting worse, but I'm not sure what to do

[shmoo]

I was diagnosed when I was 16 with scolosis - and told I was too old to do anything about it. Just to keep up with sports.
I did that for many years, but then slowly it all slipped away as my social life got busier and was working full time etc.
I'm 26 now (27 in a few weeks) and I feel the worst I've ever felt.
I will try sum up the past 10 years of my life..
Left school, worked an office job (graphic design = always at a computer), was doing ok for about 5 years; sore but got regular massages and saw a Chiro when I was really jammed up.
Left graphic design and learnt to groom dogs. Was doing that full time for around two years and I started feeling much worse. Started seeing a physio who taught me to walk/sit/stand properly and gave me massages. Still saw my Chiro irregularly too.
Because I was feeling still in so much pain I saw a specialist (2007) to see what he might have to say. Basically told me it was all in my head, that my scolosis really isn't all that bad (I have an "S Bend, 45 degree curve" thats all I got from him) and to take more pain killers. So I did.. and I ended up a few months later in hospital. My muscles from my neck to hips had spasmed and I could not move. I've never felt so much pain in my life (no I don't have kids!). ER Doc told me I can never groom again.
So had to quit that.. and slowly got myself back to full time work (took a year) doing graphic design again. My partner has been so fantastic (he bathed me the first week cause I couldn't move my arms)
I started working a full time job doing graphic design and it was killing me. Sitting all day and using the mouse. I was taking a break every hour and walking/stretching but I was still in a lot of pain.
I complied a list of things "wrong with me" for my doctor. I've had blood tests, ultrasounds, ECG, urine tests. All the tests come back fine.

constant pain in the chest area, tender to touch
depression
jaw always aching and sore - grind teeth often as well
sterum always painful and tender
exercising makes me depressed/cry and is very painful
pins and needles randomly in limbs - very painful, if sleeping i will wake up
often "seeing stars", light headed or dizzy
drink a lot (water/juice) and never quench my thirst
joints always ache
always shaking leg/s or feet/s
bright lights or sun is very glaring and sometimes hurts
body sometimes jolts/spasm - will wake me if i am sleeping
find the heat hard to deal with - sweat easily
always feeling exhausted, never wake up refreshed
constant headaches and pain in facial area
memory problems, forgetting whole conversations, forgetting events, where i parked the car, what i went to the shop for, names, dates, appointments - worst is forgetting where I am
difficulty concerntrating
shallow breathing and shortness of breathe very fast when exercising, painful to breath
loud noises or places sometimes hurt my ears or make me irritated or stressed
dry mouth - especially when i wake up, its painful to talk

Since all the tests have come back "normal" I am starting to think maybe its all due to my back. I have been seeing a Chiro every week for months now, but I can only last one week till I am jammed up again.

I am currently not working, and struggle to do most daily things. Doing house work, sitting up or laying down for long periods. I'm overweight (heaviest I've ever been), and can't do anything about it because exercising is either so painful, or my depression kicks in and I just want to curl into a ball and not be there. Tried Yoga for many months but it was too painful and half the time I would leave class crying.

Thanks for listening. I really needed to tell some people who can relate. I don't know anybody in real life with scolosis - and nobody seems to understand how painful and restricting it is.
I still groom dogs for friends and my partner usually has to give me a massage after. It's often hard to breathe too because my chest is hurting so much. But I love it.

I've booked an appointment with Dr Angus Gray (Randwick, Australia) for end of April.. but I don't know what to expect. I'm getting new xrays to show him and compare to my 2007 ones.

[kaizan]

HI Shmoo,

good idea to get a 2nd opinion, sound like you've ruled out alot of other possiblities. What does you local GP say? have you tried water exercises/swimming, i found that to be nice low impact and relaxing, specially if its a nice warm pool. I found that at my worst times with pain i felt a really twisted, and the hump where the curve is seemed to be very pronounced.
hard to sit for very long, stand for very long either.

Good luck keep us informed how you go. i've only just joined here but have found everyone to be very helpful, sharing their experiences and anwering my Q's.

take care Rhonda

[shmoo]

Swimming was the last exercise that I did regularly, and again, it was either so painful I couldn't continue for more than 10 mins, or I just hated it and didn't want to be there and needed to go home.

I forgot to say, I am seeing a Psych to help with my stress and anxiety of leaving the house and being in crowds. I'm also always very irritable because I'm so tired/in pain. Next week she is going to start me in a pain management class.

[shmoo]

My GP says I have Chronic Fatigue Syndrome, and well, Scolosis. Docs just tell me to go home and rest, or take it easy. But I am, and I can't continue life like this. My partner can't afford to support me for the rest of my life, and frankly I don't want him to. I want to have a career/job!

[laurieg6]

I'm so sorry about your pain. I hope you are going to see an orthopedic surgeon who specializes in spines, esp. scoliosis. If he is a member of the Scoliosis Research Society, that would be best. You can google it to find out.

Good luck with everything!

[Nancy Joy]

Hi!
First off, I am absolutely NO authority but your letter is very sad. You list a lot of symptoms that I have never heard for scoliosis- like the thirst and others. Have you considered Mayo's or something like that? You have symptoms that sound like Lupus, diabetes, scoliosis, arthritis- I mean a large variety of possibilitiies or combinations. You might just also have something extremely rare. I am NOT saying any of this to scare you, I just hate to think you have to live like this. I wish you the best in your search and I know it can be incredibly frustrating trying to get help and correct diagnosis's. You have come to a sight where everyone does care about human suffering and are willing to listen and encourage each other. Please keep us updated.

[Nancy T]

Many of your symptoms sound consistent with fibromyalgia, which is now considered to be a disorder of how the central nervous system processes pain signals (not a rheumatic disease, as previously thought).

Sleep disturbance (not waking up refreshed) and widespread pain and fatigue are hallmark symptoms of fibromyalgia.

Excessive thirst: have you been checked for diabetes? Since you've had blood tests, I presume you've been tested for that.

Sensitivity to light and sound can be from fibro, but these are also common symptoms of migraine (which can cause a lot of other weird stuff). As are the headaches and facial pain.

Getting the depression under control might help a lot, although note that fibromyalgia and/or CFS aren't CAUSED by depression, as a lot of doctors would like to make one think. But depression can really magnify symptoms and become a vicious circle.

Getting your headaches under control (which are most likely migraines) could also help a lot.

That said, it would be a good idea to see a neurologist and/or a rheumatologist, just to rule out other conditions. You probably don't have anything "rare", but you may have more than one thing going on, things that are relatively common but a bear when combined (fibro, migraine, and depression could sure make you feel like heck!).

Most of these symptoms do NOT sound like ones that would be caused by your back.

Best of luck getting things figured out. Doctors can be pretty brutal with the "all in your head" thing, and many of them either don't believe in or don't want to deal with fibro or chronic fatigue. Presenting a long list like that will get you labeled a hypochondriac in no time (believe me, I've BEEN THERE, DONE THAT!--with a mostly different list of symptoms, but it doesn't matter--it's the LENGTH of the list that makes their eyes glaze over and their mind revert to "anxious hypochondriac patient" mode).

Truly, your best bet is to find a GP who knows you well and is committed to helping you experiment with how best to control your symptoms, and who can refer you elsewhere if needed.

Good luck to you. Have you ever tried amitriptyline? That might help with the pain AND the depression AND the headaches, and it's a fairly cheap drug. It is VERY commonly prescribed for fibro (as well as for general pain and migraines), as it can help you get refreshing sleep--the key to controlling many symptoms. If amitriptyline doesn't work, there are lots of other drugs that tweak neurotransmitters to try.

Take care & don't get discouraged. And don't let the doctors get you down!

Nancy T.

[Karen Ocker]

Multiple symptoms

Schmoo:

I lot of symptoms you describe can be from side effects of medications you might be taking for pain --or poor pain control--or the wrong medications for pain. These side effects can mimic a new disease and one gets into a vicious circle! After my surgery, while I was healing, no narcotics worked because I had nerve pain from nerve "wake-up". The only help was something for nerve pain. In my case that was neurontin(gabapentin). Some scoliosis pain is nerve pain.

My suggestion is getting several opinions from scoliosis doctors who treat adults. A regular ortho or neurologist sometimes gets "tunnel vision" and will look only at one part of the spine whereas a scoliosis doc will look at the whole spinal column and everything affected by that.
Nobody here can say for certain what your problems are but we can help you find the right course regarding scoliosis.

[Karen Ocker]

Multiple symptoms

Schmoo:

I lot of symptoms you describe can be from side effects of medications you might be taking for pain --or poor pain control--or the wrong medications for pain. These side effects can mimic a new disease and one gets into a vicious circle! After my surgery, while I was healing, no narcotics worked because I had nerve pain from nerve "wake-up". The only help was something for nerve pain. In my case that was neurontin(gabapentin). Some scoliosis pain is nerve pain.

My suggestion is getting several opinions from scoliosis doctors who treat adults. A regular ortho or neurologist sometimes gets "tunnel vision" and will look only at one part of the spine whereas a scoliosis doc will look at the whole spinal column and everything affected by that. You are doing the right thing having x-rays for comparison.
Nobody here can say for certain what your problems are but we can help you find the right course regarding scoliosis.

[shmoo]

thank you everybody for your replies. everything you have all said is very interesting.

i've been tested for diabietes, arthritis, um a whole bunch of stuff.
is there a doctor in sydney aust that specialises in Fibro? ive read up a bit about it and it sure does sound like what I am experiencing.

im working off my depression meds and i think im doing ok. i went two full days yesterday before i felt like passing out/vomiting. my psych tells me Effexor is very hard to get off.