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...
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! (=
Firstly.. welcome to the club nobody actually wants to be a member of. ( chronic pain)
Secondly..
Well, I second everything Aronia just said.
I have compression of the cord in the cervical area,
And autoimmune disorders..
And a lot of what you said is familiar.
Aronia is a great source of information.
Hugs
jc
My originally family doc. was not doing anything for me, no meds, no more tests, so I had to find a new one (even though we had a 12+year history). I think they were mad that I was using cannabis.. Unprofessional much?
I got a second MRI which shows everything in my first MRI has worsened. T10 herniated has become a Disc Protrusion, with cord compression. Slight increase in Disc degeneration, slightly more narrowing of discs. New blood work said RA positive (really low vitamin D). However the days I take a vitamin D supplement, it seems to make my back much worse?
No one I have seen in the past 5 years made any suggestions towards any time of autoimmune disease. But I'm not ruling that out. This really makes me think what else may be going on!
@Aronia, It's interested you say the balance issues could be caused by my cervical spine (which I do not doubt). REAL similar pain to that, in my thoracic spine. I find it strange when I mention it to any doctor I see, it does not seem to get to much thought towards it. (Is this because surgery on cervical spine would never be done unless you are wheel chair bound and dying? (in Canada at least)
I saw a third surgeon after a ER trip. They looked at my history, mri and X-ray CD's, and told me this; The surgery would be a very big procedure, and they can not guarantee it will help make the pain better, and can also not say whether it will make the pain worse?!!?!!
I am hopefully getting another opinion from a fourth surgeon soon. (my parents really seem to be pushing it, thinking surgeon would solve things, but I'm not really to sure what would help at this point.)
I'm now taking stronger, time-released meds, which seem to help manage pain a lot better (considering tylenol 3 did not even touch the pain). There are pro's and con's to it.
I will also take a look into inversion therapy. (:
I have "Good days" and BAD days. Today was one of the bad days.. feeling tired all day, pain more situated in my neck and back of my head area. Feeling down, maybe slightly depressed? Most days I don't (or can't? ... I can't even tell the difference anymore) do much, spend most of the time in front of my tv or laptop (not good I know, but I don't know what else to do!)
I don't think I realize the amount of pain I'm truly in. I take 0xy 3 times a day, which is time released. On the rare occasion I forget to take it even 45 minutes later than the time I normally do, I'll realize my back is beginning to feel MUCH more stiff and painful.
I don't really know anybody I can talk to about this; I have one good friend - who lately I haven't been talking to that much (never talk to him about pain). And my cousin (that is very close to me) who I usually just try to enjoy the time, when he is over, and not really talk about my pain. (Although, over the past little while he has seen me in severe states, and I think he knows how bad it is. He'll usually end up leaving and giving me my own time -like when I couldn't walk from my bed to the washroom myself, think I scared him a little lol.)
Yes my mom sees me and understands what I'm dealing with but I don't go full blown talk about my feelings and what not with her. Some days are just really hard, where I wish I had kept in contact with some people who were "genuine" with me, but it's so difficult to do. Sometimes I'll cry from time to time (like right now), always alone though lol. I know I can't give up and that I must keep fighting, and as long as I do, so will my mom.
I'm a little confused on the medical side of things.. 3 surgeons said no surgery. Physiotherapy does nothing for me. My doc. prescribes me meds. (which I don't like taking but know I *need**). Prior to being given the meds, I was told my cannabis was okay to treat the side effect of nausea, two months in, I'm told I can not have thc in my system or my meds would be discontinued...something about being worried I trade my meds for cannabis with a dealer and give profits to the doc. causing him to lose his licence? WHAT?! I don't know any dealers, and I have a govt. approved cannabis licence. Lol...anyways I had to quit cannabis..what else was I to do? (Have my meds, the only thing really providing me major relief be taken away?!)
I'm currently waiting for an appointment with a fourth surgeon. And waiting on a referral to a second Chronic Pain management clinic. But is there anything else I can really do? Like how do I get my life back? Return to school? Get back to doing things I loved but no longer can? Any time I slightly push myself even just with light stretching I end up in bed for a couple days.
Other than the pain meds, any actual progress towards seeing any specialists seems to be moving at a snails pace.
I *should* be returning to school this year (in September) but I don't see how I will be able to do that, either in bad pain or on serious pain meds. I had to take a year off before getting in university, and was forced to take a year off after my first year. If I don't get back in school this year, I can't work, what the H3!! am I to do with myself? How do I move on with life?
They're like we'll willing to do anything and go anywhere with you (referring to going over seas to find a "top" doctor who will do surgery.) I'm like can I try aqua therapy, and I get "buy the sessions yourself and go if you want to try it". Contradicting to me much? Or am I just tripping?
We picked new paint colours for our bedrooms, and then they said to do the same one as them so I said ehh, do I have to, but ended up agree and said sure. I ended up taking my original colour pick off the que-card, and they totally flipped on me, like oh you're mad of your colour choice. No I'm mad about life, my entire situation, what I'm feeling, what I'm going through, you get mad at me.. not helping.
Am I just over thinking things?
I went to the park, was told to get home because the car was needed, so I came back right away with the car which needed gas. Get in shit for that. Is it bad that I just want to be alone and relax? I did meet an elderly guy at the park with the most awesome dog! I waved hello, but regret not asking to join him at the bench he sat at for a chat (although he was having breakfast.) Maybe I'll see him again next time? Don't really know anyone else that would like to have a "regular" conversation.
The thought crossed my mind "I feel like dieing", but no not at all. The second that came to mind, came a bunch of thoughts about why I do not. I would not say I am suicidal what so ever, because well, I'm not. And I've told my parents I've had that thought once before..so...not really a secret. I think it's more, just that I'm tired, annoyed, sad, then having to put up with that angryness on top of it all. Like I'd rather live in pain and be able to walk, then to have surgery not have pain and not be able to walk anymore...(in a worst case scenario situation). [Surgery argument; no I did not actually say that, just thought it.]
I want to get a dog, well a puppy and they were on board with it. Then all of a sudden they're like, you don't need a dog to be the centre of your life, get your back fixed. Like I understand a dog is a lot of work and training (which I am totally capable of doing, which I currently do with our older dog, which I've done in the past with other dogs.) It's just our older dog is my moms dogs, thats the way she sees it, thats the way the dog sees it. I don't just want a dog because "IIIII want one", but because I really want the responsibility and bonding. It gives me something to look forward to when I wake up every morning, because right now I don't really have anything.
Whenever I'm out and hear people talking with each other, laughing, having a good time, I think ...wow I miss that, nice for them, what a good time they're having, wish I could have that.
tl;dr Feeling down. No One to talk to. Just want to relax by myself and not be bothered. No clear solution to my pain but having surgery is being pushed down my throat. Just want to feel normal again.
Sorry it's long, had to get that off my chest.
You write really well! Maybe that's your future career?
The last two days I've been having real, real bad neck pain and migraine like headaches. Today was not as bad (still hurting), but I've been feeling really tired as well. On top of that all my muscles feel sore, and I mean everything!
Lately I find myself looking at the clock from the second I get up until I'm back in my room at night, in the comfort of my bed. Basically I am counting the hours down, trying to "pass time" until its bed-time. For some reason my pain seems to be less at night, so I'm more comfortable using my laptop in prone position on my bed.
It's difficult to do a lot of basic activities. Someone asked me if I'm reading books, might have been my doctor - I can not keep a book in my lap/on a desk and look down at it and I can not hold a book at eye level with my arms and look straight, for more than 5 minutes without aggravating my pain.
I'm on a decent dose of pain meds and while they do help a huge amount, I'm still battling pain. It's hard to find a balance between pain free and functional - as when the dosage gets to high, I'm not at all comfortable being in that state (almost zombie like, not remembering the day) and also dealing with some unpleasant side effects.
Things like getting really drowsy, but then getting nightmares. (And I'm not talking nightmares like a normal person gets once in a while, but those opioid-withrawl-symptom type of freaky-nightmares! Where you get up and spend the next ten minutes trying to get it out of your mind so you can go back to sleep.) Usually I get out of bed for a snack and wait 15-20minutes before trying to sleep again.
Well thanks again for the reply. I find that I do not really have anyone I can comfortably, openly talk about my pain/problems. Posting on here helps a great deal!
Two, if you are unable to work and aren't lucky enough to have someone provide for you apply for Social Security. Even so, financial security is so very important. You will need a good lawyer after you are denied the first time. They do not charge unless they win the case so no lose there. It takes a while to get it and you will need doctors stating that you can not work etc and why.
Third, be careful with pain meds. If the doctor offers a procedure try it. You don't want to be dependent on pain meds, especially at such a young age.
Fourth, keep coming to DS for support. You will find kind and understanding people here that have been through it all. If there is a local support group in your area, attend. The more understanding and people who are willing to listen can lessen your depression.
I take Zoloft for depression. I have had a battle with depression since the age of 12 (56 now). Keep trying meds until they find the right one and the right dose to help you. It may save your life.
Best wishes...I will send a friend request. Just know I am here for you if you need support, ideas, or just someone to listen.