Hi, I'm new here. Need a place to talk...

First off, my name is Mike. I'm 32, & just south of Boston.
You would think Im in the greatest place in the world, as far as medical resources. I even have an aunt who is at the top of one of the best hospitals in the world. So how is it that I could be here you ask?
12 years ago, somehow, I developed a completely debilitating pain. Like can't walk for days, sometimes a week.
The pain was my left testicle. So, I figured, no biggie. A couple tests, some meds, maybe a surgery, all set. Right?
I had about 10 of every test under the sun. Nothing. Got bounced all over the state to all kinds of specialists. Nothing.
Each one said, "its in your head". I suspect many can relate to the fury induced after you hear that 20 times.
I've been to pain clinics, had all kinds of shots, "non-narcotic" meds. gabapentin, neurotic, etc. all the antidepressants, tricyiclics, & on and on.
I even convinced a surgeon to cut out my left one, gave him permission to remove everything around there.
When that failed, I sent my medical records ( total nonsense from my longterm pcp, who never believed me for years. All kinds of exaggerated claims that made me look like an a-hole, junkie, although I never had an opiate prescribed by her ever..)
That was enough for my aunt to assume I was a drug addict. Cause I requested meds from my pcp, after years of no progress. So, I try. Didn't qualify. So I tried another place, & lied about an addiction. I've been on Suboxone for a year +. it worked ok at first, but soon stopped being effective for pain. It has turned my brain into jelly. I'm now not only physically useless, but mentally junk.
A decade ago, I was very intelligent, and hard working. I lost my 20's, which should have been profitable.
I'm now realizing that Im never going to get fixed. I'm ok with that. However, given my age, Im not going to ever get the meds I need to function. I can't reliably work, can't play with my 4 kids (all conceived on my birthday, when id buy a couple of percocets so I could get my birthday "gift". My wife is amazing. Supportive, understanding, & really deserves better. I can't even have sex unless I have meds, which was rare before, and not for over a year now.
I have absolutely no desire to live anymore. None. I don't own a gun to protect my family, & no life insurance. This is because it keeps me alive. If I had either, Id check out, potentially. Although I like to think I Wont do that to my kids.
But lately, I can actually imagine crossing the line.
I see therapists 1-2 times a week, but Ive seen all the best specialists in the area.
Never once have I been taken seriously. I Wont live like this forever. No way. I'm really close to done now.
everything Ive ever gone to the Dr or ER for, has been this issue. Ive sewn my own fingers back together, and all kinds of craziness. I do NOT complain of pain.
Yet, that doesn't matter. I had a not cut out, that doesn't matter. What do I need to do to be taken seriously, & get the meds I need to live my life? Im not buying them, and Im not faking another injury. I shouldn't need to. I should be taken seriously. Do I need to write 20 personalized suicide notes to these hacks, just to open their minds, so the next guy is taken for real. I'm sorry for the rant. I'm out of friends and family, so I have nobody to vent to. I just really need some HELPFUL advice. Not 'exercise this, green tea that'. I've tried it all. I know what works, but can't get it. Where do I go from here? I don't want to die, but I will before I do this for any additional length of time. I'm sorry. Just need to say all this somewhere. If you made it this far, thank you. I do appreciate it. Mike..Boston Ma.

I've seen them all... every kind of Dr imaginable. Most gave me less than 10 minutes of time. The only reason I haven't given up yet, is I can't do that to my kids. I love them so much. But what good am I really if I can't give them what they deserve? no park, bike rides, swings, etc. I'm lying down in agony most days. What kind of example is that? You know what I mean? Does anyone know of a Dr in new England that has any desire to actually change a whole families life for the better?

Many of the places Ive gone are teaching hospitals, ie, Lahey. Clinic. This is likely the best city in the world for medical knowledge. Most of the big hospitals are teaching hospitals. Around here, at least.
Thank you for what you said in regards to what kids will remember, & telling me that you'd still want your dad around. Kinda got me a little teary. I keep looki g at it from both sides, with or w/o me. it hurts.

I'm sorry about breaking the rules. I honestly Didnt see it, but I understand. my intent was just to express my feelings and situation, to people that can't send me to a looney-bin. I can't exactly say that stuff anyone. A lot of it is because Im just not comfortable talking about my feelings. My wife knows, but knows not to react yet. I can't really talk about how I feel without starting to cry. I don't know why, cause I don't cry. I've never posted about my issues anywhere, but feel like maybe getting it out may help. And, who knows, maybe I may actually get some help from it. You never know who may be reading. Could be a Dr that's only 100 miles away, that's up for the challenge. I hope your not upset about this, but I don't believe in god, so I can't use that as help either. I've tried, I just can't. Drives my wife nuts!!! she's very religious. I lie about it to the kids though, cause I can't imagine being a kid without god. I really, sincerely apologize for breaking the rule. I'll try not to do anything similar again. I am hopeful for something positive. I know we all understand each other, but my wife understands, & it only goes so far, you know?? At some point we all need some physical help. That is not to downplay the mental and emotional support. I appreciate anyone who takes the time to read my post, & think "darn, that guy is hurting". (both ways). every little bit counts. maybe someone will even feel better about their issue. I would like that too. Again, Im sorry, & thank you for the well-wishes, both of you.

I have been to each, multiple times for various tests or experiments. My aunt is waaay up at B.M.C., but since I was hurt so bad, I blew off holidays for like 7 years (except a few). So, I went to her house for a Daytona 500 party last year. I had just began ANOTHER set of meds, including xanax. I found out later that I looked all messed up. In reality, part was the meds, (id pass out standing up, driving home...) & part total anxiety from being around all these people I hadn't seen in about 4 years. As a kid, I was sooo close to this particular aunt, uncle, & younger cousins. So she saw me (no idea at the time of my issue), all screwed up, only playing with my kids, not interacting with all these other family members that I do really love and miss. Obvious red flags... When id get into a conversation, id cut it short and go for a ride, or a coffee, to avoid panic attack. That Didnt look good either!!!! So between her suspicions , & my pcp writing nonsense in my records, I was screwed. The Lahey Clinic fixed my buddies prostate cancer, and I saw the same group, + a few specialists. I was so optimistic, & treated so well, I thought I was done w/ this. I had the surgery, went back for a follow up, in agony, same symptom. & just blown off. Talk about shock... I was so amazed before that, I wrote everyone on the team a note, expressing how professional and fantastic they are, then when it failed, I got a 'sorry. I don't know. Good luck'.
I only mention the above, because if Im telling people where Im at, and asking for help, I should supply anything that may be pertinent somehow. Hopefully, it gives someone,eventually, if not you, some clues or ideas.
I have not been to Dartmouth Hitchcock. I will be looking into it though. Thank you. May I ask about your particular issue, & how they helped you? I have state ins, so may need to pay out of pocket. Any info you can give me would be great. were they willing to give you reasonable time, & listen, & give you some pain relief while researching your problem?
My situation sucks, in that nobody has diagnosed it. Its not like a slipped disc, & its visible. In my age bracket, if they can't see it, they call you a liar and tell you to go home.
I've never expected an instant diagnosis. I've just asked each Dr to bounce it off of his colleagues, guys who he looks up to, or guys that have seen everything. That's all.
Anything you feel comfortable telling me about your issue and results there would be more appreciated than you know. At this point, I'm tempted to go to Mexico every few months, just to get what I need to work. I'm gonna lose my house and car in 2-3 months if I don't get back to working steady (auto damage appraisal/repair). my savings is almost gone. My girls' b-day party in 2 1/2 weeks will be the last of it. So any recommendations will be taken seriously. Thank you so much for replying. Really, thanks.

Good. I'm glad you weren't upset with me for anything I said. This is the first 'free to say what's on your mind' type of experience Ive ever had. I've always been careful how I say what I say to Drs and Therapists. It felt kinda good, in a way, to say how I really feel. I don't want to jeopardize this opportunity to communicate with people who understand me.
I am actually in my car, just leaving a therapy appt, & I think that letting out some of my desperation last night/this am, may have just contributed to the conversation I had with my psych. I was able to let him know a little more, what type of crossroad I feel I am at. It was the most honest, hold nothing back talk Ive ever had with him.
I think he may be realizing how serious this can be. That seems to be a step in the right direction. The down side, is that he recommended 2 more meds to try. not pain meds, but other crap, used off label for pain. I've tried so many, & been offered so many, I can't keep track, but I would like to hear some opinions /experiences with them.
I told him to give me the names, & id research. ( I research all meds before committing)
1). Rsperdal
2). Sequel.
I have no expectations for either, I think I was on #2 for a bit years back. I will be researching more tonight.
To answer your question, no, Ive never been to a fertility doctor. Its never once been mentioned. It may be worth looking into though. Id honestly be shocked if that got me any progress, but I can promise you that I will research that avenue. If you care enough to suggest something, I am obligated to openly consider it. Thank You for even thinking about me. I've paid people hundreds, that didn't even put forth that much effort.
It sounds goofy, but i feel like joining here will prove to be my best decision yet, regarding this mess. Im hoping to hear from someone with an experience like mine. Regardless of the diagnosis, & outcome, some knowledge of what's to come would be nice. Knowing tomorrow is a surprise sucks. I hate surprises!
Thanks again for taking time to read this, whether you reply or not. It feels good letting some of this out.

Beautifully said vickie

I second that.. beautifully said Vickie

This is a safe haven for us.. 24/7 so will be seeing you

Best of luck

Hi Mike and welcome to the chronic pain forum. From what I have read it sounds like you have ran through the gambit. As one of the other said, the unknown can drive a person crazy not knowing what is really wrong with them.

Something that has caught my eye is with you stating you had addiction problems in order to get Sub that paper trail is probably followed you around and more or lels haunted any possibility of a dr rxing any pain meds to you.

I am not sure how much you have kept up with all the new changes with rules & guidelines concerning treating chronic pain patients or not. Regardless, it is getting very difficult for people with clear cut diagnosis' to get pain meds. It is getting really difficult and being a CP patient is very trying. The drs are scared to death the DEA will come in & yank their license, so we as patients are really put under the looking glass so to speak. If a person does not have medical proof by way of medical testing to back up the diagnosis then they are out of luck. It is a whole new environment to say the least.

All I can tell you is hopefully a dr will be able to come up with whatever is going on with you an give you a proper dx.

You are still very young, do you have any facilities that will help retrain people that have medical conditions that prevent them from performing their usual job? We do where I live and people are retrained all the time to work with their medical issues.

As far as your children go, just being there for them goes farther than any amount of money that is spent on them. I think it was Teddy that spoke well about the children.

Keep us posted on how you are doing....Take care...Susie

Even if you haven't signed the consent to share form in terms of your Suboxone program itself, any *impressions* right or wrong, that a treating physician has...go in your chart. How you dress, if it looks like you havent slept, if you look pale, anything and everything can go in there. So who knows what that PCP started as far as your paper trail etc. It really sucks but thats how it is, especially with chronic pain and the neverending journey to the center of the earth for pain meds!

This might sound weird...but it almost sounds like you're having phantom pain. As in phantom limb, not like you're making it up. Maybe the issue was your left testicle, and now you're continuing to have the pain even though its gone...and thats why nothing is really working other than pain meds which trick your brain into thinking nothing hurts?

I dunno, just a thought. I also like the fertility specialist idea, if for no other reason than a fresh set of unbiased eyes and the logic that no stone should be left unturned; but I'm just having a tough time trying to come up with what it could be, because you've been on everything that should have made a dent, which is what made me think of phantom limb.

I would tend to agree with the others and seek out the best fertility doctor first, and then maybe an endocrinologists...I read your story and I'm so very sorry for all you've gone thru with no help from doctors and I know it's easy for us to suggest doctor's, but you do need to push on for a diagnosis. Took me 19 yrs to finally get into an RA doctor that finally listened and did the extra test that I needed to finally get a RA diagnosis...all my bloodwork came back clean therefore doctors telling me it was in my head, finally this doc did a hand mri and found damage to 3 places on my right hand...So do keep pushing for a clear cut diagnosis. make a journel for your doctor of what your going through, as maybe a jouneling might lead to a diagnosis...Vickie stated everything good...
Many many prayers and well wishes, and please know we do care and you can always vent on here...

Ok. Last nights response, I just wrote twice, cause my phone shut off. So, it wasn't as well written, and lacked many details (which, I suppose are what matters!) that the first one did. The one I wrote the second time, made me sound like kind of a jerk. Also, more importantly, it lacked direct, individual acknowledgments, thank yous, & even a general reply to one suggestion.


Since I have a teenage son, I don't even attempt to use the computer. I use my phone, exclusively. My fingers are kinda big, so it takes a long time for me to type out anything significant, and have it be legible. Plus, this thing insists that it is so smart, it knows which letters I want to type next, & "helps me out". Also, I often hit the back, period, or wrong letter, when using the lower right corner of the keypad, so I spend a lot of time correcting things.


There is a valid reason for the above paragraph!!!
It is to let you guys know, that a reply can easily take an hour. When the phone shut off, I was mad. So, I did not take the time to include everything I did originally. In hind sight, I should have just gone to bed. I hadn't slept a wink the night before, and all I did in exhaustion and anger was look stupid. So I apologize.


Additionally, I did not take the time to answer questions, or suggestions 2nd time around.
I am grateful to have found this group. To have people that have at least an idea of what its like to live like this is great. Many people care, but don't understand. To have found a group that care AND understand, well, I can't explain it yet. Its too new. But Im grateful. And Im not grateful of much, and rarely have anything to be grateful for.


I will take any and all suggestions offered, with an open mind. If I have been down that road, I will say so, but still be thankful that total strangers care enough to think about my problem, when they have their own.


As I said, I will investigate the reproductive Dr. Avenue, & see what happens. All stories of success I have read, with similar sounding pains and region, have been women. That kind of sucks the wind out of your sail, when halfway through a success story, an OBGYN is mentioned!!
I promise to look into it though.


Phantom limb: I've considered. I have not totally ruled it out. I've read a lot about these types of things. The thing w/ phantom pains, is that they tend to be successfully treated using any number of the medication combinations I've tried, particularly the ones that are used primarily for seizures and depression. The reason I have NOT ruled it out, is because ive read stories where those didn't work. It may just be that those people don't have phantom limb. Or, it may be a chemistry thing. Until Im convinced, its on my list of possibilities.


Pcp records screwing you for stupid reasons: Been there. I got a copy to give to my aunt. I hate this Dr., so I just had to read them. She had notes, that I was unshaken, dirt under my nails, dirty clothes, smell like cigarettes, & have body odor. These same complaints were made multiple (5-6-7) times. All in the middle of a work day. I fix cars, its hot as hell, its 2:30, & I smoke. of course Ive been sweating and my clothes are dirty. Not mentioned though, is that my hands and face are clean, and id bring a clean shirt, towel, whatever, to sit on. Just in case I have grease, or something on me. That one hurt. immediately I realized why I was already dismissed by any specialist/clinic she sent me to, before I walked in. I was a deemed a dirty, junkie loser well before meeting a receptionist. The damage that her foolish, occasionally false, often greatly exaggerated, notes did to my chances at help were staggering. Those same notes are at the best places in the world. Even with a new Dr, and new referrals, if ive been to that location, I may as well not make the ride.


I found a new Pcp shortly after that. He dismissed me immediately. I've only been to him 2-3 times in past year. Only because he made me. But I now know to shave, shower, etc. Even just a 3 month checkup, a 10 minute visit, may as well be a court hearing. I stopped washing my hands and face, & running there from work, then running back. Lesson learned. But a lot of Collateral damage done before I learned it.


Journal: I've had one for years. Each starts as an empty 5 subject notebook. I gave up on it long ago, because nobody studied it, & it was the same thing, over and over. My life is pretty predictable, so I rarely have an occasions where I do something physically, that I haven't done a million times. Sometimes a task may upset me more than it should, & I would record that, but as a whole, it doesn't take a genius to spend 20 minutes, reading various excerpts from various books, spanning 11 years, to realize that its constant, & most activities can set off a signal that drops me. (I was asked to keep a journal shortly after this began, by my pcp at the time, who was fantastic, but moved down south in 08. that's how I ended up with the woman who made me look like a dink.)


I actually wrote a new reply earlier, that was much better, & explained some things I haven't gotten across properly. But, my phone shut off again, so I wrote this. It was supposed to be quick, & explain a few things that I think I need to clear up, since last nights post sucked.


***I have no intentions of using meds INSTEAD of getting the right diagnosis. But, I will not progress in life without them in the meantime. I'm going to lose my home, car, very soon. I have zero income right now. I have been selling my old Ford parts to pay bills. Stuff I will never be able to replace, cause of rarity and expense. I have only a few months worth of bill money left (in parts, I mean).
All 3 girls have birthdays this month. I can't afford a party. I had to move into this crappy house last year, when I lost the one we loved. I moved into this tiny, awful place, so they Didnt have to switch schools. All ive done is kinda sorta stayed afloat. Now, Im out of money, time, & options. Literally. I don't have time to get the right diagnosis before moving on. I need a good job, & I need it now. But, if you can't make it to the car in the morning, you end up with no job. Like me.
sorry. That was to be quick. But it was long, & I don't have time to finish. So, its open ended a little.
Happy 4th to you all, & your families.


Mike, I went in & made paragraphs in your post to make it easier to read for those of us with tracking problems when reading. Also, please note the owner of Healing Well has rules here at the forum that he asks us to honor. One of the rules is language, since this is a family oriented site we have to keep it clean as we never know the ages of people reading these posts. I hope you understand, thanks...Susie

Post Edited By Moderator (straydog) : 7/4/2013 1:31:05 PM (GMT-6)

I really did not expect any of my words to be considered outside any boundaries. I intentionally Didnt curse, & Didnt think twice before using "h**l" or "pi**ed" in a sentence. I assure you, I did not intend to offend anyone here.
If any member was actually bothered by either word, I would like to say "I'm Sorry". Honestly, it never crossed my mind.

I have not yet addressed publicly a few questions posed to me yesterday. I will, but later. I just wanted to apologize immediately, & separately from anything else.