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FuzzNJ posted:
First post, just signed up today because I need to vent.

Migraines started over 20 years ago, the body pain, neck, back, shoulder blades, shoulders, joints and now tingling and numbness have been getting progressively worse for over 10. (short, simple description) It limits my activities and relationships and wears you out and you end up angry and depressed.

If you are reading this board, you know what I'm talking about and I probably don't need to go into more detail for this post.

My wife knows everything, my kids know a little, but I had kept it a secret from everyone else, at least the extent of what I was going through. First thinking it's no one's business and secondly I didn't want everyone asking me how I was doing all the time, looking at me like an invalid or always looking at me to see if I was faking pain or with pity.

I had no problem up to this point when people thought I was just lazy, a jerk or even an addict simply because it was easier than explaining the situation to someone who didn't understand and would probably not believe me.

I've seen more than a dozen doctors and I have complained about this pain to all of them, going back 20 years now. I have had to make several emergency room visits. I've seen 3 different neurologists, tried massage therapy, taken barrels of over the counter pain medication and a few years ago drank an ocean of whiskey. I have bought new beds, new pillows, new office chairs, new shoes. . . .you probably know the drill.

No one took it seriously. As long as it was just me people were angry at, I could handle it.

Now a family member decided that it was his duty to get involved, accusing me of being an addict, talking to at least one child about my health and my reduced activity and deciding to tell my in-laws and possibly others (it's still early) about what he considers 'family secrets', my substance abuse and/or addiction.

I have never, not once, been prescribed opiates for this, ever, nor have I purchased or taken any illegally. The strongest thing I've taken, outside of an emergency room visit, is a prescription tylenol and for the last year a little bit of pot. It's the only thing I found, besides unconsciousness, which is hard to achieve at times, that reduces the pain and occasional spasms.

Now many in the extended family think I'm putting my children at risk, my family at risk, the cops will be busting down my door and taking all my assets, on an on.

So I explained, in enough detail as to remain shorter than a novel, what was actually going on.

Like I said before, I had no problem if you thought I was an a$$hole, but when you start screwing around with my entire family like that, wow. I could understand if he cared about my well-being enough to sit down and talk to me and/or my wife, or even try to put together an intervention. We would have been able to answer every one of their concerns that way. Instead this childish, petty, backstabbing, gossip was the route chosen.

In retrospect, there are situations I could have handled with more sensitivity, but I did nothing to deserve this and now my wife's family is in turmoil over this, no communication between siblings, disbelief, lies, secret conversations. This is the last thing I wanted. I've told my wife for years if it ever got to be too much, I would just leave, never to be seen again (dramatic I know, but totally serious). I can fight my own battles, I don't want my wife to have to fight her own family because of my crap.

One possibly good thing that came from this is that I now have an appointment with another doctor. I gave up long ago. Honestly, I'm not expecting much, but I can't stop until I find out what the f is wrong so I can somehow prove what I'm saying.

Thanks for letting me vent.

pi$$ed off and in pain in NJ
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Caprice_WebMD_Staff responded:
Vent here any time, FuzzNJ. Welcome to WebMD!
We must let go of the life we have planned, so as to accept the one that is waiting for us.
~Joseph Campbell
 
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77grace responded:

FuzzNJ, Hi and Welcome ,I too have Migraines,They started when I was about 16 yrs.old ,Now 58 yrs.Thank God they have been better the last 8 yrts,.But I definatly know what you are going through!!!!
See a Dr. as soon AS possible,I'm sure you have before but you did'nt say whats wrong!Do you know???I am very familar woith neck shoulder.,bacl etc.pain!I have tumors that grow on the nerves on my spine and have dealt with alot pain for over about 30 yrs.!
I'm here for you any time!Venting helps but you need to see a Nuerologist and maybe a Pain specialist!
Sorry about your troubles with Family!!
Blessings,77grace
 
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FuzzNJ replied to 77grace's response:
Thanks for the replies.

I do have an appointment with a 4th neurologist next week, but honestly don't have high expectations. I actually don't have a diagnosis, so I don't know what is wrong exactly. I gave up quite a while ago as it got too frustrating. This situation has forced me to kickstart another round of doctor visits, and I'm not looking forward to it.
 
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77grace replied to FuzzNJ's response:
Hello again,
Well I will keep you in my prayers and hope that this Dr. has some ideas for you!I'm sure you have probally had alot of tesrs???MRI'S Scans and all that??
I know how frustrating it is!!!I still suffer with alot of pain everyday and it can be very tirersome!!I try to take alot of beaks during the day,its the only way I can get anything done!But I am so thankfull to God because with these tumors I could easily become parralized and he has pulled me through!He will for you too!Give it a chance!
77grace
 
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Peter Abaci, MD responded:
Fuzz,

I know you are really frustrated, but I appreciate the fact that you have opened up with us. It sounds like your plate is really full, and I think you need some help in dealing with both your medical issues and your family situation. One of the things that I frequently hear from patients is that they feel alone and isolated with their pain, and they truly find it helpful when they talk with other patients who are working through similar challenges. Sometimes we need to vent, and certainly effective communication is also important both to your own well-being and for the health of your family.

I think it would help if you started to think about pain as the disease, as opposed to viewing your pain and headaches as symptoms. It is natural to worry about finding a diagnosis, but I recommend you shift your focus more toward what ways that you can better manage the pain. Find the right doctor who you can talk to about learning new tools to better manage pain, headaches, and stress. I think this will be a better use of your time and energy.

I frequently see how chronic pain problems can not just be trying for the individual with the pain, but also how the whole family can be affected. This is an area that can benefit from some help and guidance so that everyone feels like they are working together to support each other as opposed to being out of sync. Consulting with a pain psychologist or therapist who can help you with your pain management strategy as well as help you with your family dynamics can be a big help and ease some of the weight that you feel you are carrying on your shoulders.

Again, thanks for reaching out.
 
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FuzzNJ replied to Peter Abaci, MD's response:
The 4th neurologist I saw two days ago diagnosed fibromyalgia. Another doctor I saw the following day when told admitted he never even thought of it because I'm male. I suppose this is the same of all the previous doctors as well.

That's assuming the diagnosis is correct to begin with. I was already on Cymbalta, but now I've been prescribed Lyrica. First 3 days 75mg once/day, then twice a day. The Cymbalta alone did nothing, as well as wellbutrin and every other thing prescribed so far and I can't even remember all of it.

I've read good things about lyrica and hoping it works for me as well. Thanks for letting me vent and I will post if this works or not.
 
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lazie responded:
Dear NJ, I have been in your position. Heck, I still am only now it's because of aruthoritis. In the 80's I saw a headache doctor in Dallas. Turns out that the major blood veins to my brain were shuting down and clamping on my brain. But, I saw alot of neurologists no help. Had them since 1973. So, google head ache doctor. Things are so specialized. Don't give up.
 
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fibrofran17 replied to FuzzNJ's response:
Hi Fuzz, sorry for your troubles, hang in there it will get better!
Reading your post it was VERY similar to my symptoms, perhaps you have Fibromyalgia??A rheumatologist would give a better assessment for that. It took me 20 years of the doc merry-go-round and thats what I was finally diagnosed with. You have many of those symptoms. Check out that route it could be your answer. Take care of yourself and put your energy into your health, best wishes , FibroFran
 
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bren_bren responded:
I think, like the doc said, that many of us hone in on a diagnosis. It's easy to get swept up in the aspect of labeling our conditions when our energies are much better spent focusing on treating the symptoms rather than focusing so intently on what is causing them. I'm one of the unlucky ones who doesn't have an official "diagnosis" but chronic pain for 6.5 yrs. it's tough when you can't label what you have because lay people don't perceive our chronic pain conditions as being real. We can't say 'precisely what it is, so it must not truly exist'. Thinking of it as a "disease" makes sense. Then you (collective you, and me) can move on from obsessing over what the cause is; rather than treating its effects. Dr. Abaci makes a lot of sense. Read his statements again...
 
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dfromspencer responded:
Hi, Fuzz

Welcome to the site. I am so sorry for your pain, and family problems. I too, have suffered from chronic pain for years on end. I hope the Lyrica works as well for you, as it does for me. I however, have been on opiates for many years along with gabapentin, then lyrica. The lyrica seems much better for me.

I don't like prying into other's family affairs but, i feel that you should have been more up front with your own family, including your wife and children. Many of us feel that children, even younger ones, understand alot more than we give them credit for. I know how you feel, i am the man, therefore i don't need anyone's help. Well, you married your wife for better or for worse, and you need her support. You also need your childrens understanding and support. That way, this situation you find yourself in today, would be a moot point.

I hope you find a good pain management specialist to help you manage your pain. I am going thru the V.A. and they have an excellent Dr. Have you served? If yes, try the V.A. in your town or city. And, i certainly hope they give you something to help with the pain, something better than just lyrica. If i had to do without the opiates, i would go insane from the pain. Discuss that with your Dr. it couldn't hurt.

Well Fuzz, best of luck to you, and come back often, we would love to keep up with your treatment! Dennis
 
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FuzzNJ replied to dfromspencer's response:
The Lyrica failed horribly. Bad reactions, swelling of the joints being the worst. Could barely walk the second day of the full dose, so the 5th day.

Now the doc is trying a higher dose of Cymbalta, 90mg/day. Been almost a week of that and I wait, again without expectaions of success.
 
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mummycow responded:
When i read your 1st post i thought you mite have fibro......as i have it and arthritus. I try to get my husband and 19yr old daughter to try and understand what im going through day in and day out with no luck, where as my 10yr old son is the one helping me wash and dress and helps around the house. I'm sure my husband and daughter think i'm just being lazy and looking for excuses for not doing everything anymore. I get no help from either sides of the familys.....no-one seems to understand and to be honest i've had anoth of it all. Pain-killers do nothing nor does gabapentin ( 600mg 3 time a day). It doesnt help that my arthritus meds are doing nothing either but hospital and my doctor wont change them. So beleive me i do understand what your going through hun. xhugsx x x x x x x x
 
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anita532 responded:
Fuzz - There might be a few things you have not looked into. Specifically a chiropractor treatment every two weeks. Opiates, especially codeine is usually not a great pain reliever, but better than nothing. On the other hand some people get complete relief from codeine. Food triggers: oranges are usually the worst offender, lots of others. Most migraines have a hormone component to them. Make sure your doctor looks into this, even if you are a male. Muscle spasms are the absolute worst because it increases your pain tenfold. Try to get the pain under control so you do not go into spasm. Lastly, can you get injections of steroids for pain management into your neck in your area? Worth every penny. Sounds like you might also have calcium deposits on the spine in your neck. Horrible, but can be managed. There were some good posts here, too bad the authors did not report their state so you could contact them. I am from Canada, home of universal health care (to an extent). Good luck.
 
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An_247638 responded:
Dear Friend, Don't let it get you down, I'm in the same boat and you are not alone. I will Pray for you. I had Juvenal Arthritis since age 7. Since no one acknowledged it, I had to live with the pain on my own. P.E. classes sucked! As a young adult into my 30s I work hard and played harder. I suffered many minor injuries to my joints. I was diagnosed with Fibromyalgia about 10 years ago. I didn't want to believe that is what I had, but I went with it because oddly enough, once my pain had a name people could recognize, they had some sympathy. I have the same symptoms and pain you describe...except for this unrelenting burning compression pain I feel down my spine. At times, I often push myself harder than an able bodied person resulting in terrible pain and fatigue. My last doctor put me on Paxil saying that Fybromyalgia patients respond to it, even though it is an anti depressant. 3 months, and no relief, in fact, due to the time release nature of the drug, I was have time released episodes of pain. I stopped taking it. It was an awful drug with all the side affects. Since I didn't respond to the drug, my doctor decided that I did not have fibromyalgia and suggested I seek counseling, because, in her words, I was "not self centered". OTC is all we get...they won't give us pain meds because we seem unstable and they don't want a law suit if we take our own life on purpose or by accident. The only recommendation I have for you is this...See a natural way. Acupuncture works well. be set a side a day or two after a treatment to just rest. Seek a doctor who deals with inflammatory disease. Go on an anti inflammatory diet (no White foods) Find Detox options such as ionic cleanse, sauna, hydro therapy and even colonic therapy. Do light exercise like yoga, walking swimming. The thing that works best? Getting with God in worship or prayer. Somehow, he doesn't want to see me in pain. Like I said, I will keep you in my prayers...you are not alone. One last thing. This family member. sit him down eye to eye and describe your pain and how it takes away from your life and how you don't want to be pitied or a burden. Tell him that if he is willing, you could give him a taste of that pain and see how he would react to it. Take care ~ Your Boat Mate


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