So I don't know where to begin but I'm in need of advice. I'm 21 and I live with my fiancee and her daughter. My fiancee is in constant pain throughout her body, but mainly her back arms/shoulders and neck. I know this is like saying the sun is yellow to you all, but I've been searching the internet for advice and help. She was unfortunately assaulted when she was young, so thats where her major back and neck damage came from. When I first met her 2 years ago, she hadn't been taking any major meds for the pain and refused to go that route. Unfortunately, the pain just started getting worse till she was forced to get help from them. About a year ago she started losing feeling in arms/hands. She can barely get up out of bed sometimes. We've back and fourth with the doctors and no one has come up with anything. Lupus has been bounced around and shes been told to see a rheumetologist. Meanwhile, her PM doctor started giving her Opana. It works well but didn't read about it until after taking it. Sometimes, the pain is so bad after working she takes more on 1 day than she should for her schedule. So cause of that one day she might not have any and already starts to feel terrible like a withdrawal coming on. So she's been praying for another answer to get off these terrible pills. She's an amazing, loving, very caring and spontaneous person. These past 2 years with her though, it has def taken its toll on her mentally. I try whatever I can do to help and be supportive so as to ease her pain. A friend of ours mentioned cleveland clinic was the place to go for help. I'll do anything to get rid or help her pain, is this place worth it? I live in buffalo,ny so def have to get some money together to make it happen, so just need to know if its good or not. Thank you all, I know this was long.
sorry she and you are having to deal with ANY chronic pain situation. but the bigger thing here is there just has not even been a true diagnosis yet per what you have stated? just exactly what(and be as specific as possible) types of real scans or any other testing has she had done? any MRIs or at least CTs of her upper back thru that c spine area?
when it comes to what you described here as her ongoing symptoms, that c spine simply would be the very first place to look for ANY level of problems. this sounds VERY highly possibly neurologic or radiculopathic, as in involving the nerves up in that c spine somehow(like herniations or other stuff up there simply impinging upon the nerves)? but knowing exactly what she has had as tests would seriously help with trying to find what would even work specific to THAT pain generator. and make certain she has or obtains each and every copy of ANY types of testing reports that get done or have been already done too.
going numb anywhere can be related to in almost any case, the nerves or bloodflow loss in alot of potential ways. or sometimes can involve both. has she ever had an EMG/NCV to simply even check just how much real nerve flow velocity is actually running thru specific spinal nerves down the arms? if not, that would be a good test to have done. considering her very early in her life assault, there could easily been have some type of real underlying damage(even the much deeper level of more the soft tissue types of damage to like muscle and tissue in whatever WAS actually damaged) that was not seen or picked up on then that "created' certain abnormalities in how well aligned or real damage to some levels of her spinal esp in that c spine area were/are(was she taken to at least an ER when this occured back then?). the younger you are when any type of real 'body impact/trauma' occurs and specific types of real damage is not looked for or fixed THEN, can cause even unaligned bones in her upper back thru shoulders(or the discs and vertebrae) to start to actually grow in a very messed up way too.
another thing that she really needs to be concerned about here, no matter what meds she is on, is to ALWAYS always stay within the docs SET dosing guidelines. PM is a whole different world than simply 'seeing your primary" for narcotics is. she needs to find out whats wrong so it just can be more appropriate to HER pain treated, along with simply finding other ways to also help her better manage at least the flares. and not taking more of the very strong narcotic just "becasue" her pain flares. she HAS to be careful of this since the her docs "trust in her" is at stake and she simply will not have the meds she needs later if she uses these now too(she just HAS to always remember THAT anytime she 'thinks she 'needs more than aloted for that day, there ARE many different types of potential consequences)? this is also how addiction simply does start in people, by starting to take more than the doc rxes for pain. and once you just 'justify' that taking because i AM in pain but more than FOR that specific day, it gets soo much easier to simply keep ON justifying it til you can end up with alot more issues to ahve to deal with BESIDES the pain. its just how it starts, taking even one dose over that line that even 'justifys thos as 'okay' in her head. so she DOES have to be careful. what you take today may leave you totally without any help and WDs at the end of that med cycle(is that one pill over the line at the beginning or middle l even really worth it?). and nobody wins there, ya know what i mean? been down that stupid sick road myself way back when, and all it took was ME making the CHOICE to take more than i should have, then it got easier and easier to make it okay in my head, cuz afterall, i WAS in pain? addiction seriously just is, alot of very negative behaviors that we KNOW are wrong, but doing it anyways til it becomes something we just 'do' or fall back on inside our heads since we did it once at all and made it 'justifiable at all. there IS a very real thought process that takes place every time we have to take any meds. but the same thing does also hold true when we do NOT have them to take so we take from 'another day' down the road. its all choices and behaviors. she just NEEDS to be fully aware of what this can lead to and how it can also totally destroy any levels of ongoing now, and in the future types of real solid trust with all our docs too.
but finding as many other ways to try and manage this as possible WILL and can help her TONS when she does have a specific type of flare and needs to knock it down to tolerable? using the "other things, REALLY does help, and also keeps me totally and completely compliant now being even IN a PM situation and dealing with a ton of crappy pain and spinal cord injury fallout i NEVER ever in a million years thought i would ever have to deal with myself. my nightmare started with my initial MRI done in 2001 and got worse with things that simply got found out too.
but knowing more specifics of 'her' overall ongoing situation really would help us to try and help her in all the best ways right now. esp what real types of testing has she had to try and pinpoint the real underlying generator(s) of her pain. seeing a rhuemy(good idea) would help rule out a TON of possibles here since when i wnet to mine a few years back, they honest to god tested me for anything and everything even remotely inflammatory that even could generate my levels of pain and ongoing 'heat' too in my knee which alll the like 50(this IS a very long multi page results) some odd things tested for all came up neg. but it DID rule out a ton of stuff, so the docs CAN go in another direction. after that, my ortho gave me my RSD dx.
knowing whether or not she IS in pain management (went back and reread she IS? for how long has she been in it and also going thru her 30 or 28 day supply earlier than she should be? and he has not seen her IN any types of WDS yet? how does she avoid that? it usually IS pretty noticable to a good PM) where she had to consent to signing a contract and also consent to UAs(have they done any UAs on her yet when she was out of her meds?) out of the blue and also possible pill counts would help. if she is not already in this type of a good pain management facility where they 'know pain' better than any place else, she most definitely NEEDS to be, just for that level of accountability TO someone and what they can offer her as possible treatment options too. not only do they show you and give you many modalities to try and manage pain, they also place very specific guidance and direction ON any levels of narcotic use, like how many you CAN take any given day of your narcotic which she just NEEDS so badly right now before she ends up in that much worse for her type situation. if i had had the level of direct guidance and direction way back when i had to take narcotics in the 80s, my addiction just never ever could have happened knowing i 'would' have very specific types of consequences if i 'chose' to over that line at all(and this IS ALWAYS the patients 'choice' to take more, not the pain 'forcing you, esp when you have planned ahead with "other ways for just THAT type of situation). just knowing that no matter what i could in no way shape or form get any 'early refills' would have really shown me back then that i did have a real true level of 'accontability to someone who was watching my intake much more closely. (so she DOES have that much oversight and she is STILL doing this? that could be for a few different reasons that NEED to be watched for) she is also very young i am assuming becasue of your age, and finding out certain things NOW vs after you have totally screwed yourself is SOO much better, trust me.
have they checked her for fibro at all? i am more concerned that she is having THAT much and body wide types of symptoms AND the 'numbing' at all here too. this is becasue the spinal cord DOES pretty much govern all nerve impulses that create overall function in our bodies, that spinal should be scanned from the very top to bottom with at least a contrasted MRI to just see what is there now. just knowing every single 'symptom and where her pain actually is and how it 'feels to HER would also help too since very different types of real pain genrators will display theiur own 'brands' of pain presentations to certain degrees which then can be bettter tracked back to the source in her body. so the more info the better here zen. i DO hope for hers and your sake too that they can figure out whats behind her pain so it can be better managed. but SHE also simply DOES NEED to be trying other ways to treat flares or keep pain to more minimum too for HER own sake. please, when you have the time if you could just give the info i asked about, it really woulsd help alot in helping you and her here. marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Im so sorry she is in so much pain!! What tests or scans has she had done if any?? Has she been on anything other then opana?? I know you said its been helping her but she feels like she needs to take more some days then others. If thats the case she should talk to her doctor about a Break through pain med which is a short acting pain med so she can take those when they start to flare instead of taking the opana so much. She might actually be able to cut back on it. How much is she suppose to take a day and how many mgs??? If I were you next time you talk to the doctor ask him for a MRI and cat scan to be done on her back. It could be nerves or ask him about degenerative disc disease. My mom has it and she had similar symptoms that your girlfriend is having. It means the stuff between her bones is wearing down and the bones are rubbing together cause her the pain and numbness. I have nerve damage in my back and when I have flares my back swells it hurts so bad im in tears and i start to lose feeling in my arms and hands and cant grip anything. Does that sound like whats happening to her?? Did you ask your doctor about a nerve medication?
I would also be careful how she is taking the opana cause she dont want to be looked like as a addict. You said you were 21 so im guessing she is the same age or a year younger? A lot of doctors and pharmacists even though she is in real pain will look at her like a addict or a abuser cause of her age and for some reason a lot of people dont believe young people can have that sort of pain so it makes it ten times harder for us to get people to believe us. I am also 21 and have been dealing with this since I was 14. I been through it all physical therapy,pain clinics,muscle relaxers and anti-depressants,nerve meds, ant-inflammatories and finally pain killers. Maybe if she had a muscle relaxer to it would help?