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Rheumatoid Arthritis
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Posted 4/26/2016 8:43 PM (GMT 0)
What kind of pain meds do people use and recommend? I was in a car accident, and have horrible horrible neck and back pain, with the RA only making things worse. I cannot get out of bed sometimes, I cannot sleep. My joints stiffen up. I have been on Tramadol and Hydrocodone for about 1.5 years now but I think it's starting wearing off. I wanted to go see my physiatrist (pain doc) about this and discuss switching meds, but I 1. don't want to sound like a drug adddict and 2. Don't want to get on any dangerous pain drugs.

He tried to put me on Hysingla, which was a complete disaster so we went back to the regular one but it just isn't having the same effect anymore. I'm tired of being in pain. I just want something to help me cope so I can live, and if I have to become dependent on a drug, or addicted I don't care just so long as I can live a normal life and can get out of bed, or sleep without being in agonizing pain.

Any suggestions?
Posted 4/26/2016 9:17 PM (GMT 0)
I'v been in pain for a long time too... same as you arms,legs, shoulders, feet forearms, everything. use to go for treatment in hospital every 2 month ( I V ) but co pay went up to 260.00 per visit been on methotrexate for a while but it is now usless,doctor wants to put me on xeljanz but i had bladder bleeding and this might start it up ???????? maybe the xeljanz can work for you. ????? look in to ... i'm always in constant pain too.
Posted 4/27/2016 12:09 PM (GMT 0)
Hi I think pain management is a Huge issue for a lot of us especially if we have more than one issue going on
along with my RA I have severe Back Problems Both from old Nursing injury and from Osteoporosis and Degenerative Disc Disease Along with Diabetic Neuropathy causing Nerve Pain in a lot of Areas
I know a lot of Rheumatologists are on the band wagon of restricting Opioids But seriously for Bad Pain they are the Only thing that works

I was on OxyContin for years and it worked well I Always Tried to take as little as I can because I didn't want to be in a position where I am at the Max and in pain not able to take a higher dose.
then a bright spark switched me to Tramadol but i found it useless and it caused weird side issues - bad dreams etc and I found I was taking as high a dose as I could and also adding Panadol-Osteo by the Bucket Loads but Still in Pain so After I had managed my pain relief Quite well for ages I was then in the Exact position I was scared of being in

so after Really trying for over a year I was put back on To Targin (oxycodone) I also use Lyrica this helps with the Back & Nerve Pain and I have Endone for Breakthrough pain Some days I don't need the endone but I have it there for the times I do need it , and this mix works

For the RA I am on a combination of Methotrexate , Arava & Prednisone (Prednisone also helps with the pain but we try to keep it at a low dose as I have been on a very High Dose for years, but some flares are too Yuck & I need to increase the prednisone for a week )
Posted 4/27/2016 2:27 PM (GMT 0)
I've tried everything everyone has mentioned above. In addition I also have Crohns disease, so as you can imagine I am in agonizing pain many times. Yes I take methotrexate, I've tried heat, I've been taking Remicade since 07, though now they switched to Simponi. But there are always episodes, and it's imperative I have some type of opiad on hand always. Believe me I have had instances where I've been unable to sleep, or actually end up screaming in agonizing pain in bed.

But the point of my post was to try and talk about pain management, and opiates specifically. Like what is safe, and for how long, and things of that nature. This topic seems to be much of a taboo, especially as of late with people getting "addicted" and all this mumbo jumbo of people abusing pain pills. The only thing it has done is made it worse for people like us. As I said I've been on tramadol and about 30mg of Hydrocodone a day, but it seems to be wearing off and now I'm interested in maybe trying something else.

Rhuematologists, who in my opinion all seem to be nerds, always seem to be scared to prescribe anything pain or opiate related. This is why I see a pain doctor because they are way more sympathetic. I have a pretty good relationship with my pain doctor, though I think he has some reservation regarding my young age even though I have been overly responsible for years.

So anyway more to the question, what kind of opiate medication are people on and how do they manage it? How does it work for you? How do you manage it with your doctor?
Posted 4/27/2016 11:07 PM (GMT 0)
I use hypnosis, heat, TENS unit, gabapentin, tylenol, Leflunomide, and plaquinel.
Posted 4/28/2016 1:23 AM (GMT 0)
Hi again I see what you mean by the discussion on opiate's and how rheumatologists are negative
I do not understand the idea that they say Oh they are addictive !! big deal most people that Need them Will Need them for Life anyway and IF Properly used they Are Life Savers
I noticed Oxycodone was 100% better than Tramadol I only take the prescribed amount and get a level of coverage that allows me to at least do some things in my day Where as on Tramadol I was a Quivering mess curled up crying in pain and taking Maximum dose then adding Panadol-osteo but this Did Not Work
if you can get a good Doctor or pain management person to get you Something that will work this will be good
Posted 4/28/2016 6:12 AM (GMT 0)
There are opiates with Tylenol, and without. I only need to take at night. I take Aleve during day. But the best I've found is the percocet without Tylenol. My Dr doesn't give me grief about prescribing at all, but it is becoming the topic De jour, with so many rock stars, and others overdosing. I guess the stats of young people dying from opiate overdose had become staggering, and so those of us who need it to live a remotely normal life are having to feel embarrassed about requesting it.
Beth
Posted 4/28/2016 7:43 AM (GMT 0)
Yes I don't think Hydrocodone is really helping me anymore because I have reached a tolerance. I think I'm gonna start "opiate cycling" to prevent tolerance with Oxycodone. What types of doses do people take? From injury or surgery I've had the usual 5mg or 10mg of Oxy, but just wondering if anyone had experience opiate cycling to prevent tolerance and can give me some advice with the dosages I take?
Posted 4/29/2016 1:07 AM (GMT 0)
with Oxycodone (targin etc) Best thing is to start at a Low dose and discuss it with your doctor I found it better to them regularly eg morning and evening that way you get an all day coverage rather than an up and down spike which you get if you take them irregularly if you have something else Endone or Tylenol etc to take in-between if you need something for a boost with breakthrough pain.
Posted 5/2/2016 7:19 AM (GMT 0)
Hi I know you Haven't asked about this and you might dismiss it or laugh (as I did) but have you tried Meditation - - Wait stop saying Ahhh No
not usual sit and imagine the ocean but Concentrating Meditation specifically for Pain
I have and find it Helps
the 3 main types I use are
1) the relaxing walking in fields of flowers type
2) Actually meditating On the Pain - where you concentrate on where the pain is accept it Feel it and slowly it becomes less till you sort of feel a numbness
3) same as 2 but this time you kill the pain you feel it then shoot it or blow it up of anything you seem enough to kill it
it dose take some time to be able to meditate so it helps your pain and don't expect results the first time also don't pressure yourself only meditate for a short while at first
Posted 5/3/2016 2:42 AM (GMT 0)
Mindful Meditation is good
Also my hot tub has been one of my best investments
submerging oneself in 106 degree water....bliss
Yes it's temporary- but sometimes diversion works the best
Posted 5/3/2016 4:56 AM (GMT 0)
I listen to David Fairweather's relaxation and stress relief videos on YouTube. He will use hypnosis to relax you and help you not focus on your miseries.
Posted 5/12/2016 3:39 AM (GMT 0)
I have been on Hydro for the last 3 years at 40MG/day and it has worked. I was originally on 60 but my RA got better so we were able to cut it back. Now though, I am not able to take a biologic any longer and the last 3 months has been a constant increase in pain levels. I have always handled this through my Rheumy in the past but this last time I went in and asked for something for breakthrough pain and she told me that she couldn't do it :(

I know there is a real push on now that they have rescheduled hydro but this is ridiculous for people with chronic pain. I went almost 20 years and almost never needed them.

I asked for a referral to a pain clinic. I just don't think my Doctor is comfortable prescribing them any longer and maybe there are alternatives that would benefit me they would certainly be more knowledgeable of.
Posted 7/31/2016 1:26 AM (GMT 0)
Has anyone tried med marijuana for some pain relief. I live in a state that med marijuana is legal and have thought about giving it a try. Just wanted to see if anyone had any success.
Posted 7/31/2016 6:10 AM (GMT 0)
Hi shknbk,
My husband and I also live in a legal state. My hubby smokes for bone pain and relief from chemo. It has really made a huge difference for him. He has end stage cancer. A friend made me a salve with cannabis oil that smells nice and really helps with wrist pain especially.
If you are not a recreational smoker, word of caution: The new strains are SUPER potent. You may want to start with a tincture and adjust accordingly. I quit smoking it years ago because the stuff being grown these days knocks me out like a light with one tiny hit. turn
Beth
Posted 8/2/2016 6:36 AM (GMT 0)
Yes, I tried it at the behest of my Rheumy a few years ago and it actually made my pain more intense. Alot more intense. Of course there are tons of people who have the opposite experience.
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