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04/08/2010 12:01 AM

Need Advice

ariesflame
Posts: 31
Member

Hi all,

It's been awhile I know. Okay..so here's the short and skinny of the crux we have: Hubby diagnosed with service connected Fibromyalgia (along with a few other things)and of course he's in Chronic pain and has CFS, IBS as well. (Though the IBS is fairly under control I think). Anyway...He also has a drinking problem. He is attempting to stop drinking. He's been to the V.A. for mental healthcare...he begged them to put him on antebuse but they said "he wasn't trying hard enough" to do it on his own. (as in: He won't go to AA..and that's simply because he's tried and every time he goes he comes out wanting to drink more and no one to sponsor him..he asked for one..didn't get one. SO he's on his own basically. His "shrink" told him that he was "avoiding" the problem by not going to AA. He is pretty sure AA has only added to his problems..multiple..chronic pain, chronic stress..and chronic drinking. He's had so many blackouts..some because of booze, but other times its just blank spots in his day of three to four hours..where he apparently loses his "thought processes" or falls asleep..he lost three hours today basically (maybe a little more). He's talked to doctors about this..and even had an EKG done because he has incredibly low blood pressure. He's calling the VA to get an appointment from his GP and see if that will get him anywhere. (Not likely this is the same GP that doesn't believe that Fibro is really a disease..and that its all in his head for the most part..won't prescribe him anything but Naproxin (which is better than Tylenol and he doesn't want narcotics). Anyone have an idea how he can push Mental health to give him his rights outside of outright suing them?

I mean really..shouldn't he be able to decide that this drug will help him? (He's used antebuse before is why he wants it..he says that he had no desire at all to drink on that stuff..(he was on it court-ordered after a DUI in his early 20s.) Anyway, how can he get the VA to help him with his recovery without making him deal with AA..I know it works for lots of people but it doesn't work for him..so please no "talking me/him into it) this is a decision that has been made..and it needs to go forward..it willl work ..and he's having at least some success..in fact a lot of success fighting this on his own..but since he's had that success its like the V.A. is refusing to even help him with the mental health counseling (and with pain management, and all that has happened in his life most likely some depression issues..(not sure if full blown depression..but even slightly manic situations have occurred.) He's had blackouts that last for hours of time..even if he ends up at his correct destination (like home) he will fall asleep as soon as he gets there..and I think its somewhere on the lines of "narcoleptic" episodes. (I think that's the right name for it.) I think it does happen in moments of intense pain..and perhaps his body sort of shocks him out of reality for awhile. Stone sober or drunk this can happen but when he is drunk he doesn't go unconscious so much and will fight back against things..anything sometimes. I think he argues with himself somewhat. (I know this doesn't make a lot of sense...LOL) But, anyway..they won't even talk to him about his other issues..he's never had a chance..and all the things seem to be connected. The DAV here would help I think ...at least try but they do a lot of that "trying" and not much seems to happen. They are a good organization I have no doubt but it seems here in Alaska their influence is minimal when it comes to V.A. issues. Just having the antebuse would make his life easier..he would know for a fact he isn't buying booze during any of those blackouts (and he has gotten drunk DURING these blackouts....and not remembered where he got the bottle from..or when he bought it for sure..which doesn't make sense but in his case..seems perfectly normal. (Not to him or anyone but it has happened more than once.)

So with this long and seriously rambling post I ask for advice from those with V.A. experiences. I know that A lot of you out there have had bad experiences but I could use any advice on resources outside of AA, (its not that he has anything against AA its that AA won't accept him as he is. He wants help not drinking he doesn't want to be told that only AA can help him stop drinking because he knows that is not true. We are great believers in "will power" if you will..and frankly he knows inside that drinking is bad for him and could kill him even..or someone else. But with the fibromyalgia and no help for the issues surrounding it he actually reaches for the bottle instead of anything else because it worked...it used to work..and it still does at least temporarily (he sleeps). Right now he's sleeping about two hours at a stretch..he's up as early as 3am and ends up crashing eventually..usually before I can get home from work..and I can't go looking for another job here right now..not and make the money I make or do what I do. (Both of which I like a lot!) My kids are in school all day, but they need their dad at night when I am not there..and spend a lot of time sort of fending for themselves "when dad is sleeping" (no matter what the cause). So far he's been good about not drinking but he's still not getting enough rest and he's incredibly angry right now that the V.A. won't help him..they actually told him that he wasn't suicidal so he didn't need help that badly. (Why does he have to slit his own wrists to get help??? Wouldn't it be better to prevent it from getting to that stage? He isn't even close and they are trying to force him to misrepresent himself just to get help it would seem.) Many do this I know but he can't make himself do it. He has family members with health issues. A sister with Cerebral Palsy that she got at birth, a brother with diabetes, a son with diabetes, a mother that had serious mental health issues at the end of her life, a father that had a drinking problem and heart problems that eventually overcame him too. When he had to go to the emergency room for something once (unrelated to fibromyalgia)they were so concerned about his low blood pressure that they did an EKG..this was a military base emergency room! So, how come not the same concern from V.A. docs? Plenty more to complain about but looking for advice really..anyone..at all have any experience fighting with the V.A. for mental healthcare for addiction without having to deal with their AA program? Also, with the AA program he would have to submit to U.A.s anytime they want him too..which makes the whole thing not anonymous anymore..which seems really illegal to me but of course most people haven't fought it and those that have are "anonymous" of course..So anyway..hoping someone out there has some answers..I know not all of you are in Alaska but anyone that is especially would be helpful..but anyone really Smile

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04/08/2010 05:59 AM
davesprettylady

I'm sorry I'm not of much help, I don't know anything at all about VAs or fighting them. But you and your family are in my prayers. I'm sorry they are doing this to you. Hang in there!

04/08/2010 10:03 AM
naddya819
naddya819  
Posts: 4435
VIP Member
I'm an Advocate

Ok, let me say this first and foremost. I don't have any experience with VA or AA, but as far as the VA goes, there is a group leader in the FMS group by the name of Raynedae, and she does have VA experience. I will send her a PM asking her to come over here and maybe she can help you. Or if you can find her, you can ask her.

Now onto my thoughts. Your husband needs to get his fibro under control. VA or not, I think you can still request another PCP, and file a complaint on the current one. He needs to get his sleeping issues under control, and probably get a sleep study done to rule out Narcolepsy, seizures, restless legs, and sleep apnea. He needs to be referred to a rheumatologist or another specialist who will treat fibro. Or a pain management doctor, like I see. When I first saw him, I told him I wanted management of my symptoms (rather than fibro "treatment"Wink, and I think at that moment he understood that I was a person educated about my disease and not a drug seeker.

For most people, narcotics do not help with fibro pain, and would not be a good idea in your husband's case anyway. However, there are medications that are given to "prevent" symptoms. The main, FDA "approved" drugs are Lyrica, Cymbalta, and Savella. However, I don't use any of them. I take Neurontin (a close cousin of Lyrica and a nerve pain medication), Tramadol--nonaddicting pain med, and Zanaflex (muscle relaxer) along with Naproxen for my arthritis. With this combination, I feel that my symptoms are managed quite well, most of the time. Cymbalta is a SNRI (Selective Serotonin Norepinephrine Reuptake Inhibitor), an anti-depressant that works on 2 neurotransmitters in the brain that are low in people with fibro (as well as depression) and for some people works quite well for the depression and the pain. Savella works in the same way but seems to have more side effects. So there are other options than narcotics that may help your husband.

I am so sorry that the both of you are going through this much trouble right now. Fibro is such a monster, and it takes such a trial and error to get anywhere with it, it seems. I know I went through 6 different doctors before I found the 2 I have now, and I know it's frustrating. Hang in there, and I'll see what I can find out about the VA for you!

Hugs


04/08/2010 10:53 AM
ariesflame
Posts: 31
Member

Thanks Naddya..much appreciated! Yea, he does need to get it under control. One of the things is..he's on a cycle right now of 8 to 10 weeks between the "fogs"...usually once he has slept for awhile..(which I assume is why this happens..he just crashes..and sleep comes because it has to). You are right on all accounts...I've been looking into the sleep study thing...the V.A. has a sleep clinic even..its amazing what they won't offer to people...even when they have it available. His doctor..oh..his doctor is disliked by many..I've met people on the city bus on the way to work that have dealt with him. Seems he somehow keeps floating along despite numerous complaints about him already in writing apparently. All I know is that for now its one of those things we "live" with but its so stressful for all involved. The kids aren't too affected, though they have been. Its sort of a roller coaster but we can't predict the down at all because it seems like it happens at random times even though it happens every 8 to 10 weeks. Though I will admit, it does seem to happen when things get tight with money (stress points you might call them). I do think he needs to start trying to pace himself when he's walking and things. He walks incredibly fast...and I am wondering if at some point his body crashes. He definitely has RLS..that's not diagnosed..but from what his family has told me he's had the jumpy leg thing going on since childhood. (Then they thought he was just being a little kid). It's hard to get the doctor he has to prescribe anything. It often takes less time to let something run its course then it does to get in to see him. It's like pulling teeth to get attention from this doctor. He really seems to not care about his job much but perhaps they just can't afford to replace him. (It's my bet). Anyway..arg..gotta get ready for work. I think he's okay today..he plans to be near home and take things easy. He doesn't want to sleep all day because he won't sleep at all at night..and that's a bad thing too..so we are back to the cycle..lol...such is life right now. I think I a member of a group that Raedyne is in...will see if she is on my 'list'.

04/08/2010 03:25 PM
naddya819
naddya819  
Posts: 4435
VIP Member
I'm an Advocate

Ok, here's what I got from Rayne: you need to go to the VA and ask for a "patient advocate". Most hospitals have them; at my hospital she's called a Patient Satisfaction Officer. Anyway, find this patient advocate and tell him/her all your problems. Your husband's chart would probably help too, if you can get a copy of it. And then request another doctor ASAP and get your husband in to see him/her!

04/09/2010 02:16 AM
ariesflame
Posts: 31
Member

Thanks..we will look into the patient advocate. As for the doctor..to get a new doctor will take up to six months. Basically he has to go through the V.A. health system to get treatment right now, and to get a doctor first you request one in writing Then you Go on a list..sigh..which is about six months long most of the time. Sometimes they just won't give you one because you can't prove they have done anything wrong or have actually done more "harm" than "good" (which are pretty relative terms..but it appears to be their criteria..anyway..the patient advocate idea is a good idea..will check into it. Thanks!
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