[magsj]

Hi Everyone (Mr. and Mrs. MelRob...hehehe...Linda, Freedom, Helz, Tired, etc. etc. etc.)

Greetings All.......I still read most of the posts and try to keep up with everyone. Gosh, everyone is really doing well! Clipping along, with a few pit stops here and there, but very encouraging )

First, congratulations to the two people who keep us all in line (not to mention sane, hehehehe, encouraged, hopeful, etc.). I read through the "grapevine" that D-day is July 12? I am so happy for you both. Could you ever have imagined a few years back that you would be in such a wonderful place in your lives? I'ts nice to see a happy ending/or is it beginning?

60+ days on Suboxone. Yes, still stuck at 4mg. I have been lying low because I just felt like I needed to kind of dig in and suck it up and let some time pass in the hopes that I would feel better. I will tell you how I am feeling, I would appreciate your opinions....I

'm not quite clear what is happening to me. I have been having pretty constant diffuse muscle and joint pain. When I first started Suboxone I had a little bit of this, but certainly not to the extent that it is now. More joint pain than muscle pain. I decided early on that I could not just sit around and wallow in it, so I have become very active (today I mowed both lawns, trimmed all the bushes, etc. etc.). As long as I keep moving it distracts me from feeling or thinking about the pain, so I just keep trying to move. Yeah it hurts but at least I am a little distracted and I just try to move through it. When I finally sit down for 30 min. or so, it's hell. I get stiff and my muscles and joints HURT. It feels systemic (meaning throughout my body or system). I don't think this is w/drawal, as I am stable at 4mg (I did try taking a tiny bit more a couple times, but it made no difference). I don't feel like I have it in me at this point to taper further.

My question to you is:

Do you think this could be due to the post-opiod dopamine receptor situation.....no longer flooding the receptors with synthetic opiates/waiting for the receptors to open again, thus no "natural" pain control? Maybe these are just regular aches and pain but exacerbated because of above? If this could be the case, I guess it's a matter of just waiting ifor more time to pass as best I can?

The other consideration is that there is some type of fibromyalgia/immune/rheumatoid syndrome going on. I have a new family practice physician who is straightening out my thyroid,etc. I have talked to him some about this but I get the feeling he wants to attribute it to withdrawal...he doesn't understand suboxone very well. He is going to start me on Lyrica soon to see if that might help.

I am very conflicted......and worried because if it's the first scenario I feel I must keep toughing it out and hope for the best. If it is more the second scenario, I will hope that Lyrica will help. But I have to honest with you all, if this is something that is going to be a long battle, whatever it is, I don't think I chose to live like this for too long and I hate this thought because then I feel like I am wimping out for failing.

All right, this is way toooo long. I was trying to keep this as short as possible, but, well you know, trying to cover the situation.

Well, if you found the patience to read through this, thank you! Any thoughts anyone wants to throw this way, I'm appreciative )

I'll keep reading and offering empathy and encouragement when I can. I will keep in touch!

Thanks Melinda for all your notes. I'm going to email you )

mags

[Robert_325]

I'm not really that concerned that you've been on subs for sixty days but you should be doing well enough by now to be at a lower dose than 4mg. I know that you've been trying.

I'm interested to know if the lyrica helps as well as what is done with the thyroid. Let me know about anything you and the dr come up with.

What tests have been done regarding potential autoimmune problems? Have you had a recent ANA, CBC, ESR, RF, etc ... all the normal barrage of autoimmune tests? If it seems there's a good possibility of autoimmune problems I would have all the tests done asap.

It's certainly possible that your body isn't producing natural endorphines properly thus nothing is attaching to the receptors. That would explain the pain at 4mg. This is something that would actually be more simple to address than the autoimmune problems. They can take years just to diagnose.

I would suggest at this point that you ask your dr about low-dose Naltrexone therapy. There's some pretty solid evidence that low-dose naltrexone will help stimulate endorphine production in situations where the body won't do it on its own. I'm curious to see what your dr says, if he/she is familiar with low-dose Naltrexone therapy. I'm not saying that is it, just that it could possibly help you.

What kind of specialist are you seeing about all this? Some of what you describe would fall under a rheumatologist but not everything. Who is treating you and advising you on the testing and diagnosis for these conditions?

Let us know a little more about who is treating you, what they're doing specifically and also ask about the naltrexone. If the dr isn't familiar with that therapy I hope he doesn't just dismiss the suggestion. It's worth checking into I believe at this time. If he chooses to ignore it let me know and I'll get you some back-up. Let me know what happens. God bless.

[melinda7.5]

Hi mags
Thanks for all the nice things you said...you have been my buddy from the start.
you know I have that pain everyday that you are talking about,the only way I can handle it is to do what you were doing today just keep busy and keep moving..
I wouldn't get to worried about the pain till your off all the drugs and then give it a little time.I think you should be able to judge a little better that way.

I'm so glad you posted...
now I have a new thread to keep my tabs on you and I wont have to chase you around the forum...LOL

Glad your back
Talk to you later, Melinda

[magsj]

Dear Robert:

Thanks so much for your insight.

So far I am only seeing a family practice physician. I had not seen any physician other than the pm physician in 4 or so years, basically because not many doctors here want to take care of people that are on methadone and norco; we have a lot of "good ole boys" in this town and I have worked with many of them and heard first hand some of their judgemental comments regarding addicts and chronic pain patients and I never wanted to be the recipient of such treatment. The thing is, after witnessing some of the behavior by MD's when it comes to addicts and people that complain about pain, it is extremely hard for me to even talk to doctors about either. I know, it's my own hang-up and I am certainly doing myself no favors!!! I am trying very hard right now to overcome this. I finally found a physician that comes highly recommended as being very non-judgmental and compassionate; I've only seen him twice. He ran some basic blood work, metabolic panel, CBC w/diff, TSH, Vit D, Vitamins B's, etc. I have a hx of hypothyroidism and my thyroid was low, my Vit D low, Vitamin B's low, so have started on a regimen to correct these.

I have this unreasonable fear that the doctors aren't going to believe me or are going to walk out of the room and roll their eyes, (I guess based on some of my experiences behind the scenes as a nurse) it has really caused a problem for me as a patient. I have an appt in a few weeks again with the prim. care doctor and I'm trying to over-come this and really tell him how I feel. So when I say the sx seem diffuse/systemic/fibro or rheumatoid-like, I am basing this on my own education and what I have observed through the years.

Yeah, I know I would need ANA, rheumatoid factor, etc. etc. and to see a rheumatologist; they are really in the front-lines now for diagnosing many complicated diseases, quite often even rare diseases that are not necessarily immune or rheumatoid related; they are usually very bright physicians with a lot of tenacity.

So, as you can see, I would have a long way to go to rule out or diagnose any of the above sx. Getting a proper dx seems so daunting, as YOU woud know!!!! It must have taken a long time and lots of patience to get your diagnoses!

I was most curious about the natural endorphins/not attaching to the receptors. I CAN talk easily to my pain management md (who is rx'ing sub), maybe he can help me with this (nice guy, but not too bright /). I'll check into the low-dose Naltrexone. I hope to start the Lyrica sooner rather than later.

Well, nothing worthwhile is ever easy / I looked at my original calendar today and became a little sad, I would have dropped to .4mg today..... it's okay though because I do know I am doing my best.

Sometimes I get a little paniky when I really hurt at the thought of not being able to take anything for pain even if it got bad......I don't even want to THINK about that but in all honesty there have been a few times when I have thought how welcome some pain relief would be. I "think" it's just wanting some pain relief and not craving, but I cannot be sure.

Alright enough for the night. You are probably thinking "Man, she doesn't post forever and then she won't shut up!".....hehehehe, that okay )

mags

[Robert_325]

mags .... I wanted to give you some ammunition for when you talk to the dr about the low dose naltrexone so at least you don't think I'm crazy even if he does. Here is a good link for naltrexone. You can also do a google search for "low dose naltrexone for endorphine production." You'll get a full page of good links on the subject. Here is the first link to check out. I pray this helps you. I have a good feeling about it personally. It's worth checking into I think. God bless.

http://www.ldninfo.org/

[magsj]

Robert-

Thanks so much; I'll do my homework. My pm MD is a really nice guy, like I've said, but often is a little vague.

Are you in Texas or Seattle? Hope you are getting some sunshine. We are heading to Seattle Saturday and will be there until Wed. I hope the sun is going to shine; it's so beautiful there, especially in the sunshine. Looking forward to a nice Mem. weekend. Hope you are together and have a wonderful weekend also!

Hugs,
mags
PS - Tell Melindal I'm emailing her this morning )

[magsj]

Hi Melinda-

I just wrote a long email to send you and at the very end my keyboard froze up....ugh!!
I thought was able to save it by copying before re-booting and then pasting, but I am not at all sure that it went through to you succesfullly. I am having trouble "reading" my "sent" emails for some reason, so I appologize if you recieved this message several times.

Let me know if you don't get a lengthy email from this morning. It's 9:53 am here in California. If you didn't recieve it; I'll guzzle some Gatorade for strength and sustinance and write it again....hehehehe )

mags

[melinda7.5]

Hi mags
I got your wonderful e-mail today...it was late when I got home from work
Its ok tomorrow is friday
Im in bonney lake where are you going to...
Let me know, Melinda