Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
gr33zyinc
This may be a little long so please bare with me (: ... but here is some background information on me...
[Age of 16] I start to get random headaches (Tight band around my head type) that would last random amounts of time (from as short as 45 minutes to as long as 5 days). They also ranged in severity from mild (like seasonal allergy headache) to so severe I couldn't stand / felt sick. Along with this I had a stiff neck and upper back/trap area pain. Stiff neck and tight trapezius?. Scapula? I had this for about a 14 months.]Then it just stopped (for about a year.)
[Age of 17] The pain came back but slightly different. I began to get upper back pain, pain along scapula and spine of scapula, forward shoulders, lordosis, lower back pain, tight rhomboids(?not sure), tight neck, tenderness/pain if I touched the middle of my back (spine in Thoracic area) and in my neck area (Cervical Spine area). It is worse it the morning when I wake up (The earlier I wake up the worse it is). Get's better as the day progresses and then towards the night I'm in pain again.
So basically, this started about 4/5 years ago (21 now) with upper back/trap tightness and tension-headaches. This turned into thoracic-area-back-pain. Fast forward today and I'm just always in so much pain I don't know what to do with myself. I basically spend the entire day on my computer or watching tv. (Had to take a year off university. Cant not hold a job). I stretch periodically and foam roll (only when i can). Theres times i can not even stand getting on the foam roller. *lately it seems the stretching makes my pain worse.
My pain ranges from moderate to severe and is always there. Its either muscular dominate or very bad down my spine (one or the other most of the time). It can be dull, achey, burning, pins and needles, or like someone is wedging something against my back directly in my spine. I feel it in my neck (cervical spine), middle of my back (thoracic spine) and upper lumber spine. Pretty much every muscle in my back is sore and tender. Other muscles sore also; inducing abs, ribs, gluten, quads, calves, basically everything. Pain in shoulders, hips, knees, ankles, wrists. (not all at once, and pain comes and goes). Tender spots (chest, elbow, quads, calves, back, neck). Get a headache where it almost wraps around from the front top of my head all the way down into my neck/upper traps. When the pain is really bad i just need to be alone, I can not even talk to anyone.
Also remembered and thought I should add, been having weakness in my legs and some balance problems. (the other day for the first time i was walking to the bathroom and almost fell, I had to hold onto the stair-railing and wait a couple minutes to recompose myself). I also feel like i am clumsy/fumbling things.. such as going to picking up a pencil or spoon and dropping it, or going to put a cup in the sink or cabinet and hitting the side of the sink/cabinet instead of placing it directly inside, or kicking my knee against the coffee-table.
As well not remembering things as well, I'm not sure if its an actual memory issue or if I'm in so much pain i can't think straight. I'll wake up *some* days and not even know what day of the week it is, or someone can be talking to be say something to me - i will respond and literally five seconds later have to ask them again because I have no idea what they said, watching a tv show and by commercial break not remembering what I watched, or watching a tv show and the next day not having even the slightest memory of what happened.
I feel tied during the day, but not tired like I just went for a jog.... but more like I have the flu and I have no energy type of tired.
Not sleepy at night, and tired during the day (it almost feels to me like its the middle of the night at 3PM!) Stomach seems sensitive to spicey,sour foods. Chronic sinus problems/ nasal drip / dry cough. Not the greatest memory, write things down often and still see to forget. Sometimes get dizziness and also very shaky (mostly hands or legs). Sometimes feel like I'm in a "fog". Pain worse in the morning (can't even get out of bed for a good 10-45minutes) then gets manageable. Gets worse again towards the middle of the night. It can be as bad as severe low back pain where I can not stand for more then a minute or two.. really bad thoracic pain where i just curl up in a ball on my bed. Sometimes its so bad I can barely get to the washroom at night. Or I feel like I will throw up and bring a pale (but i have never actually thrown up)!
Tried Acupuncture - did not help
Tried deep tissue massage - helped maybe a day at most
Physiotherapist recommended by surgeon - went to for a year and no improvement
Myofascial Specialized Physiotherapist - went to for a year and no major improvement. Was also given yoga poses and stretches to do. (no improvement)
Rheumatologist said - NO R.A. / Also HLA-27B Negative.
Pain Management Specialist - Anastasia injections (takes pain completely away, never lasts longer than 3-6hours). ......................................................- Discharged after they determined they could not help me
Surgeon - Surgery not an option at the moment. (according to surgeon from 2+ year old mri.)
Currently just doing a mix of stretches, yoga poses, and foam rolling when i feel i can. I also tried doing a stationary bike, but end up with hip pain after 5-10minutes. I am NOT doing any other exercises or weight lifting or any time.
I have also lately been dealing with increasing depression and anxiety.
Medications I have tried (may be missing some from this list):
cyzlobenzaprine - Did not do much
amytriptalyine - Did very little
nortriptayline - Did very little
Gabapentine - Helped a little (at 1800mg /day)
Cymbalta - Did not really help
Lyrica - Helped maybe, but had baddddd side effects
Advil, Tylenol, Ibroprophen* - Do next to nothing
(Currently not taking any of these). Between not wanting to take them because i felt like i was taking too much, and not being able to get a doc. appointment and being in a whole lot of pain... i ended up coming off them. (No, I was not taking the entire list at the same time).
Medical marijuana - helps with pain management and keeps me from going crazy from pain! But still in a great deal of pain.
Vitamin D and Omega-3. (no noticed difference?)
X-ray #1: slight scoliosis at L2-3.
X-ray #2: minimal lower thoracic scoliosis and ddd
MRI: schmorls nodes between T6-%12 with disc space narrowing and loss of disc signal, T10-11 moderate broad-based disc bulge + posterior osteophystes causes mild cord compression, ddd T6-T12, partial wedging T11, T10-11 herniation with mild cord compression. (This mri is about two years old).
I used to be extremely active when i was younger. Did muay-thai. Did serious bodybuilding up until the point where headaches began. Was involved in a accident (Rear ended by truck when i was in my early teens). I am currently 21.
If you actually read through all of that, I thank you very much! (=
[Age of 16] I start to get random headaches (Tight band around my head type) that would last random amounts of time (from as short as 45 minutes to as long as 5 days). They also ranged in severity from mild (like seasonal allergy headache) to so severe I couldn't stand / felt sick. Along with this I had a stiff neck and upper back/trap area pain. Stiff neck and tight trapezius?. Scapula? I had this for about a 14 months.]Then it just stopped (for about a year.)
[Age of 17] The pain came back but slightly different. I began to get upper back pain, pain along scapula and spine of scapula, forward shoulders, lordosis, lower back pain, tight rhomboids(?not sure), tight neck, tenderness/pain if I touched the middle of my back (spine in Thoracic area) and in my neck area (Cervical Spine area). It is worse it the morning when I wake up (The earlier I wake up the worse it is). Get's better as the day progresses and then towards the night I'm in pain again.
So basically, this started about 4/5 years ago (21 now) with upper back/trap tightness and tension-headaches. This turned into thoracic-area-back-pain. Fast forward today and I'm just always in so much pain I don't know what to do with myself. I basically spend the entire day on my computer or watching tv. (Had to take a year off university. Cant not hold a job). I stretch periodically and foam roll (only when i can). Theres times i can not even stand getting on the foam roller. *lately it seems the stretching makes my pain worse.
My pain ranges from moderate to severe and is always there. Its either muscular dominate or very bad down my spine (one or the other most of the time). It can be dull, achey, burning, pins and needles, or like someone is wedging something against my back directly in my spine. I feel it in my neck (cervical spine), middle of my back (thoracic spine) and upper lumber spine. Pretty much every muscle in my back is sore and tender. Other muscles sore also; inducing abs, ribs, gluten, quads, calves, basically everything. Pain in shoulders, hips, knees, ankles, wrists. (not all at once, and pain comes and goes). Tender spots (chest, elbow, quads, calves, back, neck). Get a headache where it almost wraps around from the front top of my head all the way down into my neck/upper traps. When the pain is really bad i just need to be alone, I can not even talk to anyone.
Also remembered and thought I should add, been having weakness in my legs and some balance problems. (the other day for the first time i was walking to the bathroom and almost fell, I had to hold onto the stair-railing and wait a couple minutes to recompose myself). I also feel like i am clumsy/fumbling things.. such as going to picking up a pencil or spoon and dropping it, or going to put a cup in the sink or cabinet and hitting the side of the sink/cabinet instead of placing it directly inside, or kicking my knee against the coffee-table.
As well not remembering things as well, I'm not sure if its an actual memory issue or if I'm in so much pain i can't think straight. I'll wake up *some* days and not even know what day of the week it is, or someone can be talking to be say something to me - i will respond and literally five seconds later have to ask them again because I have no idea what they said, watching a tv show and by commercial break not remembering what I watched, or watching a tv show and the next day not having even the slightest memory of what happened.
I feel tied during the day, but not tired like I just went for a jog.... but more like I have the flu and I have no energy type of tired.
Not sleepy at night, and tired during the day (it almost feels to me like its the middle of the night at 3PM!) Stomach seems sensitive to spicey,sour foods. Chronic sinus problems/ nasal drip / dry cough. Not the greatest memory, write things down often and still see to forget. Sometimes get dizziness and also very shaky (mostly hands or legs). Sometimes feel like I'm in a "fog". Pain worse in the morning (can't even get out of bed for a good 10-45minutes) then gets manageable. Gets worse again towards the middle of the night. It can be as bad as severe low back pain where I can not stand for more then a minute or two.. really bad thoracic pain where i just curl up in a ball on my bed. Sometimes its so bad I can barely get to the washroom at night. Or I feel like I will throw up and bring a pale (but i have never actually thrown up)!
Tried Acupuncture - did not help
Tried deep tissue massage - helped maybe a day at most
Physiotherapist recommended by surgeon - went to for a year and no improvement
Myofascial Specialized Physiotherapist - went to for a year and no major improvement. Was also given yoga poses and stretches to do. (no improvement)
Rheumatologist said - NO R.A. / Also HLA-27B Negative.
Pain Management Specialist - Anastasia injections (takes pain completely away, never lasts longer than 3-6hours). ......................................................- Discharged after they determined they could not help me
Surgeon - Surgery not an option at the moment. (according to surgeon from 2+ year old mri.)
Currently just doing a mix of stretches, yoga poses, and foam rolling when i feel i can. I also tried doing a stationary bike, but end up with hip pain after 5-10minutes. I am NOT doing any other exercises or weight lifting or any time.
I have also lately been dealing with increasing depression and anxiety.
Medications I have tried (may be missing some from this list):
cyzlobenzaprine - Did not do much
amytriptalyine - Did very little
nortriptayline - Did very little
Gabapentine - Helped a little (at 1800mg /day)
Cymbalta - Did not really help
Lyrica - Helped maybe, but had baddddd side effects
Advil, Tylenol, Ibroprophen* - Do next to nothing
(Currently not taking any of these). Between not wanting to take them because i felt like i was taking too much, and not being able to get a doc. appointment and being in a whole lot of pain... i ended up coming off them. (No, I was not taking the entire list at the same time).
Medical marijuana - helps with pain management and keeps me from going crazy from pain! But still in a great deal of pain.
Vitamin D and Omega-3. (no noticed difference?)
X-ray #1: slight scoliosis at L2-3.
X-ray #2: minimal lower thoracic scoliosis and ddd
MRI: schmorls nodes between T6-%12 with disc space narrowing and loss of disc signal, T10-11 moderate broad-based disc bulge + posterior osteophystes causes mild cord compression, ddd T6-T12, partial wedging T11, T10-11 herniation with mild cord compression. (This mri is about two years old).
I used to be extremely active when i was younger. Did muay-thai. Did serious bodybuilding up until the point where headaches began. Was involved in a accident (Rear ended by truck when i was in my early teens). I am currently 21.
If you actually read through all of that, I thank you very much! (=
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I can't say I was that surprised, I guess it was something I was sort of expecting considering the way I've been feeling. I don't know exactly how to feel at the moment; anxious, scared, nervous, afraid, excited, hopeful,....aghhh!
You have definitely found a new home here but sorry for the reason. I hope you stick around. Lots of wisdom, experience and support here.
Hugs,
Dianna
Just spoke with a surgeon. They said that it would be a very big surgery and that the costs would outweigh the pros at this point in time. Looks like I'm still on the same boat.
In severe! pain and still finding it difficult to do daily tasks such as put away my laundry or wash my dishes.... let alone get myself back to school :(....
All I can tell you is that I understand what you are going through and feel free to email me for support or just to vent.
Hugs,
Quinn
I had a new mri a week or two ago.... everything the same as the first mri, but worsened! Also a disc protrusion pressing on my spinal cord (t5-t6). I saw a neurologist who said my pain didn't seem to be spinal or neurological, however he did NOT have my new mri. Im having an EMG done ordered by this neurologist so I will have to see how that goes.
The spinal clinic said it would be a BIG surgery, and they can not say after it whether my pain will be better, the same, OR WORSE?!!
This (the forum) helps me keep track of whats going on, as well as vent, as well... i greatly appreciate the support of this community (=.
(t5-6)thoracic disc protrusion pressing on spinal cord.... is it seriously possible to manage this with physiotherapy alone? (and meds ad what not)
...the surgeon I last saw did not want to do surgery.(to be honest I do not either as I'm afraid D:...I'm also worried about fairly similar pain in my cervical spine that has not been addressed - would thoracic surgery change this and how..you know what I mean?)
The more aggressive medicine does seem to be helping, but I also have to take other meds to counteract the side effects of it. I honestly really do not enjoy taking them, don't really want to take them (but what else am I supposed to do?)
I hope to give yoga a go and see if it helps any. I'm also trying to get help to get funding (so disabilities, no.. I am not taking donations ;]), so that I can maybe try a different physiotherapist, rehabilitation centre, or underwater physio.
The challenge is that you are so young and surgery , unless they just do laminectomy, is not going to help probably.
It is so unusual for someone as young as you are to have such severe spine problems, it is like your body is attacking the spine ...
This is why it seems like an autoimmune thing or some sort of a viral thing that caused complications.
Someone out there has to be able to help you heal from within.