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Posted By : NotSoCrazyAfterall - 3/6/2017 10:36 AM
Hi Everyone,

I was just wondering if anyone here has had their doctors reduce their opioid pain medication yet according to the new Federal Guidelines - which essentially says nobody but cancer patients should be on narcotic pain meds.

My Pain Med appt is coming up at the end of next month and I have no idea what they are going to do so I was just wondering what has happened to others.

(My H was on 90mg of Morphine for intractable back pain...he's now down to 2-15mg doses a day with another few 15mg for the month 'if he needs it' so who knows what they think a Fibro person will need if an inoperable back gets reduced this much.)

Also, our clinic did not handle this roll out of their new med policy well. They didn't even talk to my H the first time he picked up his meds and they had dropped him by 30mg of morphine without telling or talking to him. So we discovered most changes when we went to the pharmacy or called to find out if our scripts were ready only to be told, on a Friday, you needed to make an appt before they could give you new scripts. And now...if I go look for a new doc/clinic cuz I'm fed up with this one, I will be seen as 'doctor shopping.' It's been lovely. A real catch 22.

So how is it going for everybody else?

Thanks! Hope everyone is having a much better day than yesterday tongue

Posted By : Sherrine - 3/6/2017 1:19 PM
I don't take opioids. I did try Tramadol and also Vicodin but they didn't touch my pain. But simple over the counter ibuprofen (I take 600 mg at a time). Tylenol, and a muscle relaxer called Robaxin did help me get my pain under control! There are also three medications that have helped some with fibro....Lyrica, Savella, and Cymbalta. You definitely will not be left with no help for your pain.

Research has shown that opioids don't really help that much with fibro. If they help you a lot, perhaps you have something going on besides fibro. Having pain after a diagnosis of Fibro has us think that any pain we have is because of Fibro. I fell into that trap big time. Once I realized I was getting worse and worse and the fact that fibro isn't considered a progressive illness, I headed to a board certified rheumatologist and discovered I had developed ankylosing spondylitis and sacroiliitis along with fibro. All these illnesses cause a lot of back, hip, and leg pain so I had fallen into the pain=fibromyalgia trap.

If you haven't gotten a thorough check-up with new blood work lately, it sure wouldn't hurt to do that. It would be good to see a different doctor perhaps to get another viewpoint. Your doctor and another doctor might agree totally but then again you might find there are other things going on with your pain. I was blessed in the fact that my Internist suggested I see a rheumatologist after the Tramadol and Vicodin didn't touch my pain. It was a very good call for me because now my pain is totally under control and I feel better than I have in ages.

This is just my humble opinion. I know this is frightening to you to think you won't have help with your pain but this might turn out to be a blessing for you. There ARE things to help you. Also getting into daily gentle exercise like walking, yoga, or swimming really does help with pain. Pacing helps along with stretching exercises. Learning how to do Trigger Point Therapy on yourself helps, gentle massage helps. Even vitamin D3 and magnesium malate help with pain. I find my positive attitude helps me a lot. Smiling and being happy for each new day does help bring peace and relaxation which, in turn, can help with the muscular pain and tightness. For too long opioids were given for fibro pain because doctors didn't know what else to help with fibro. But now much more has been learned about fibromyalgia...especially in the past ten years or so.

Try not to worry. That doesn't help one iota and can cause you much more pain. We are here to help you with many good suggestions that have helped us be in control of our pain. Who knows? You just might start feeling better if you cut back or even get totally off opiod medications! Now THAT would be wonderful. Let us know how you are doing because we do care about you.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : NotSoCrazyAfterall - 3/6/2017 3:10 PM
Thanks but I Am SOOOO Sorry....maybe I could have added some info and saved you a bit of typing smile Still good to read and thank you very much.

I've been on SSD for this for 20+ years. My doc thinks I also have SFPN among other things. I have virtually every symptom on the Fibro list..anyone's. I've tried just about everything for it. I have done this with pain meds and without. Been with for the last 10 years.

Last Autumn, I dropped my Vicodin from 4/5 q day to 3 w/muscle relaxers. More pain but tolerable. Made me mind my p's & q's so it was a 'good' thing (my H developed sleep apnea & an enlarged heart from taking Morphine and Vicodin + sleep meds for his back so if it could happen to him, it could to me so that's why I reduced my amount plus I knew this Fed thing was coming). I could better tell the source of pain if there was one and I was more conscientious about when I walked or didn't due to calves or achilles or whatever because I could feel it better. Then I tried a few days off completely here not too long ago....I tapered off to none. What shocked me is for all the Gabapentin I am on, it was the Vicodin that actually calmed the neuropathy-style buzz/pain cuz that was screaming. I learned a whole bunch of things and one of them was and is I do not want to be without Vicodin if I don't have to. (I have no addiction to it and my biggest withdrawal is I yawn - a lot!) I take a 1/2-10mg tab w/a 1/2 muscle relaxer about every 3-4 hours plus the Gabapentin & MMJ. I've tried Tramadol and while it worked slightly better for nerve pain than Vic does, I found it really nauseating and unreliable - sometimes it took hours to take effect it seemed. Maybe I don't have a reliable gut source of the enzyme or whatever it is to make the Tramadol truly effective in me. And wow you can take that much Ibuprofen? My kidneys would be screaming. I'm very happy for you that that helps you and you can tolerate it well. That's wonderful.

Tried Lyrica, Savella, Cymbalta, etc. Savella almost landed me in the ER. For whatever reason, I do not tolerate meds that mess with your serotonin and that other one that starts with an 'N' It sets off my nervous system. Even though I knew this from years ago, I was hoping something had changed so that's how I ended up trying Savella. Never again.

I don't tolerate humidity at all or odors or cool water but our Y redid their system to Ultraviolet recently so chlorine smell is reduced and I am hoping it won't be too terrible in there with the noise and input. I plan on going down there to scope it out...you know...see what it's like, what to expect. They do have classes but I'm not sure if the pool is warm enough for Fibro. I could probably wear something on my neck/upper back if they let you. I also have a ton of fatigue (they thought I might have narcolepsy for awhile there) so getting organized to get there from here is, well, surmountable but it's hard enough to get to the store. Big plans, little energy. You know the drill. Some of my docs have thought I had CFS too. Who knows.

I've got my yoga and about a million plans from PT's over the years but I've also been told if you are already 'stretched' feeling just standing there, there's nothing I can do with you. The hard part isn't doing it. It's keeping on doing it.

Thanks for mentioning the pain=Fibro trap. I have some scoliosis and loradosis - my 15" of fame was my neck x-ray at a rural Minnesota hospital. Ha ha ha!!! But maybe my pain appt will be a good thing in that my doc will be forced to talk about it - without falling asleep - cuz maybe it is time. The only Rheumy I've ever seen was when I still had COBRA insurance after I went on medical leave so I only had a few appts available to me. And, well, like you said...once you are stamped Fibro, that's pretty much it. It does not help, however, that we do have to remind ourselves pain is signal something is wrong, not usually an every day occurrence.

I just have no idea what my doc is going to suggest. The clinic did a really poor job of rolling all of this out on the patient side so I think we all have a little anxiety about it.

Anywho...Thanks again.
"Does it really hurt that much?" Uh...yeah!

Posted By : Sherrine - 3/6/2017 4:50 PM
You might want to check the link in Fibro 101 about Serotonin syndrome. If you take two or more medications that raise Serotonin, it can spell trouble. This could be why you couldn't tolerate certain medications. Tramadol, opioids, antidepressants, and even over the counter cough medicine containing dextromethorfen (sp) can cause Serotonin syndrome and you can be very sick with this. The link explains it well along with symptoms of Serotonin. Syndrome.

My Internist checks my liver and kidney function twice a year and everything is fine with me. For years I was taking 2,400 mg of ibuprofen a day. I now only need 1,200 mg thanks to the muscle relaxer I take. I have developed bleeding ulcers twice from this. The rheumy wanted me to go on Remicade infusions and I declined...especially because f my family and my own medical history. My Internist agreed with me but he also put me on misoprostol that helps prot ct th stomach from ulcers. So far so good and it's been five years doing this.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 3/6/2017 3:53:27 PM (GMT-7)


Posted By : NotSoCrazyAfterall - 3/6/2017 5:43 PM
Thanks - I'll go look. I didn't know about opioids messing with serotonin. I wonder why my doc wouldn't have thought of that??? Anyway smile thanks
"Does it really hurt that much?" Uh...yeah!

Posted By : Sherrine - 3/6/2017 7:32 PM
This is from the FDA.

/www.fda.gov/Drugs/DrugSafety/ucm489676.htm

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

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