I was have been dealing with neurpothy in all 4 limbs, arthritis, pyhbromialgia&a few other illnesses i believe have stemmed from the neurpothy. those of you that have this condtionn no how painful it is. I did have a Dr who kept me comfortable but never completely pain .I don't expect i ever will be. i was on oxycodone 30mg as needed, oxycotin 40 3 times a day which changed to opana40 about 9 months ago. now i no longer have this Dr. he's gone and i was forced to go to a pain clinic where they 1st put me on fentinal100mg patch without care that i had withdraw from the high dose i was on previous to that. next month they changed it to opana40 2 times a day. after i couldn't bare that pain they finally added an opana10mg. this is not working for me at all. i wake up in with draw add much add i try and Try to deal with the pain & take the pills as far apart as i can tolerate. i have no life at all anymore because i can't function like a normal person or my normal, which is better then this. the clinic wants to keep focusing on my back as much they have proved nothing Is wrong with my back its all the neurpothy they still keep trying. it sends that's all they no. so i guess what i an asking is does anyone out there no of any kind of help i can get to deal with my pain or recommend something better then a pain clinic? my new pcp had offered to out me in suboxin but what i read about it Is horrible do i an afraid of that. please help anyone i would be very greatful for All and Any suggestions at this point. I have been stuggleing for months like this and just have had enough. I don't no how much more pain i can take on a daily basis without help and i have gotten nowhere taking to this Dr i now am stuck with unless i find an alternative solution or a new Dr. I am in search of both. It seems they don't listen nor care.
welcome to this site oxypana,
there are alot of people on this site in the same shape as you. Severe chronic pain and no doctors willing to take you or docs that don't treat your pain adequately. oxycocone 30 mg a day with oxycontin 40 3 times a day is a hefty dose of narcotics and i would be a drooling fool if i had taken that much medicine. you said that regimine was controlling your pain relatively well, knowing you are never going to be pain free. the big jump to opana was a big dose increase of narcotics as opana is way stronger than oxycontins and oxycodones. and yet still no pain relief. fentanyl 100 mcg is a large dose of narcotics, just about any more fentanyl is used for terminal cancer patients.
i have to tell you that oxymorphone or opana is as big as you get with narcotics. if that isn't working for you, maybe the doctors need to look at the cause of your pain and not just giving you narcotics. neuropathies sometimes respond well to an injection to the area in which the, lets say the back hurts. an injection of numbing medicine and steroids can calm the pain originating from that area most considerably. massage, physical therapy and other non opiate treatments are also being used extensively and with success, which is why docs recommend it. the doctors need to find the source of your pain, it is as simple as that. then everyone will know what the problem is and maybe surgery would help or the other treatment i listed above might decrease the pain.
also oxypana, if the docs give you enough pain medication at this point of your dependence, they worry about knocking your respirations out, causing your death.
maybe soboxone is your way out of this terrible pain situation you find yourself in now. i too have chronic back and neck pain with painful muscle spasms and numbing of my arms and hands all of the time. my legs some of the time. you are going to have to quit depending on the pain docs to keep giving you larger and larger doses of opiates, because with what yousaid in your question, you are maxed outon the opiates, opana is the strongest and you were taking a lot. Empower yourself to find out what is wrong with you, ask questions, seek answers, look for alternative methods of pain relief for i am afraid if you don't, your life will stay as miserable as it is, and that is no quality of life. only you can find the answer. go and find it while you still can.
peace and hopefully more answers for you,
the sweetest hippie
I can tell by your handle that you have an addiction problem I believe or you are sure tolerant of the dose you are on! I have fibromyalgia, & have most of my life. Are you sure you have a correct diagnosis? It isn't something in your back causing the pain besides the fibro pain? If fibromyalia is causing you pain there are other ways than opiate drugs to handle it I did for years & years! I have many other chrontic pain issues from bones breaking & crumbling, to two failed back surgeries & Lupus so I am on oxycodone 15mg for all that, but not for fibromyalgia. First you need a definate diagnosis & some nerve tests done. Then if they find notheing but fibro, you need a pain med vacation. Suboxone would do this for you, get you off all pain meds so you can at least function. I'll bet you do nothing at all. Exericse is the most important thing for fibro pain! Walking & stretching, even yoga exercies.
I lived with it & worked every day for over 20 years to raise 3 sons as a single parent. the only time I took anything for it other than a couple of tylenol was when in hospital with my bad back. In my personal opinion, fibro whould never be treated with opiate pain relievers. All they do is cover up symptoms you should be working out of without drugs. I know I may get some flack about this, but if I can do it so can anyone. fibro is a miserable disease, & I did office work, so sitting most of the day. When I got home I'd mow the grass or walk the dog,& felt tremendously better just getting some exercise. I wish you the best, but I think the suboxone will help you more than anything. Try to get your doctor to prescribe physical therapy & occupational therapy too if your insurance covers it. It will teach you alot. The National Arthritis Foundation is the researcher for fibromyalgia & their magazine is great for info & tips on how to deal with it. The physical therapy will get you moving again. Just my thoughts... Mary
Hello. Would like to add my two cents worth. The withdrawal should be helped at the pain clinic. Were they aware of the actual amounts you were taking? Did you bring your full records there? Something is missing in this for you, just as the others suggested.
my hope is that you were straight forward, but if you hedged a bit, please let them know. Pain from withdrawal will make the other meds appear not to work. This sounds like a spinning spiral for you and it isn't leading up.
Be well. Advocate for yourself and ask for help from the docs and staff. They know this well.
I'm not sure that adding more opioids is the answer for you. It is well documented that opioids are not the best medicines for both neuropathy or fibromyalgia. Opioids are often not very effective for nerve types of pain. That is why you are needing such high doses-they just dont help much. Have you tried anything like Neurontin (gabapentin) or Lyrica (pregabalin)? They are better suited for treating nerve pain. Cymbalta is another good one for chronic nerve pain. Nerve pain is very very painful and it is different from other kinds of pain!! One thing to remember, and it sounds like you do know this already, is that with chronic pain, it is unlikely that you will be pain free so one needs to work on getting pain to a tolerable level and improve functionality.
Piling on more and more opioid medications does nothing but increase your tolerance which requires more and more meds and, since opioids dont help nerve pain much, you also end up trying to add more and more until they become a crutch and actually do harm more than help! Opana is very strong and so is Fentanyl. 40mg on Opana and 100mg on Fentanyl is the strongest dose you can be on. Fentanyl 100mcg/hr is an equivelent dose to Opana 40mg three times a day so I'm not sure why you were getting withdrawals unless you just werent absorbing the Fentanyl well. It does take a few days to get into your system as a consistent blood level though. So now you are on Opana 40mg twice a day and Opana 10's in between? Be sure that you are consistant in taking them and dont wait until your pain is very severe before taking them. Take them by the clock-not by pain levels-this will keep you ahead of the pain. I would also look into adding more non-opioid forms of relief like Neurontin, Lyrica and/or Cymbalta, along with the Opana, or some of the other drugs in those families. These drugs dont work on an immediate basis like pain relievers do though. It can take up to a month for full effects although you may begin to get some relief sooner. Be sure that you are staying active as much as possible for the fibromyalgia. Water exercises are very good therapy for fibro if you have access to a pool. Gentle stretching is good too. Start slow so that your muscles dont get over sore in the beginning and make you feel worse. Try to work your way up to biking on a stationary bike (this may take several months) or try a yoga class. Yoga is excellent for both fibro and nerve pain. Remember, too, that even though the pain may not be from the back, all nerve impulses are sent through the spine and spinal nerves to the brain so sometimes blocks in these areas can be helpful even if the back isnt the cause of the pain. Pain can still be interrupted at these pathways. That could be the rationale behind doing treatments to the spine. The spinal cord and the brain are the main processors of pain in the body. All the other nerves are connected to these "mother" nerves. Another thing you might want to consider is CBT (Cognitive Behavioral Therapy). A good start is an evaluation by a good psychiatrist who works with chronic pain patients. This is NOT to say you are crazy or it is all in your head-no! Pain is a subjective emotion and an unpleasant sensory experience. We process pain with our brain and spinal cord. Attitudes and stress can play a big part in how we deal with pain. CBT can be a very valuable tool to help us cope better with pain. This is why some folks have higher pain tolerances than others. It all comes down to how well one's coping mechanisms are. Stress, depression, anxiety all make pain worse and harder to cope with. CBT helps this. Chronic pain has to be tackled from many different angles for us to truly manage it. Good pain control should involve Drs and practitioners from many specialties. Dont discount alternative therapies like chiropractic, accupunture and massage. It may not treat the original issue like neuropathy but it helps because pain from neuropathy has many repercussions and treating these repercussions can help with the original issue. Chiropractic and massage can help to relax muscles and reduce stress leading to better pain control. Physical therapy and exercise makes the muscles stronger and more resistant to painful impulses. Our minds have much to do with how pain is perceived and how we deal with pain, so psychiatric care helps us keep our minds as healthy as possible and strengthens our coping mechanisms and reduces our anxiety, which in turn helps pain. We cant expect good pain control to come from one source. Be open to other specialties and treatments. Most of all be patient. It sometimes takes much trial and error until we can find out what works to manage our pain. Each person is so different that the meds and treatments that work for me may not work for you. You have to find out what combination works best for you! Since pain is multifaceted, we cant expect all of our pain control to come from one class of meds, like just opioids. so be open to other drug families and one treatment type may not control all of the pain so be open to many kinds of treatments and this will help you by approaching pain from different angles. I hope this helps you some. I am a chronic pain patient too so it is not like I am without sympathy. I have had to do much research on my own and I have learned a lot. I hope that you find what helps you soon! It may be up to you to help yourself by tackling your pain from many different angles. You might need to talk to your Drs about trying these other angles and also by keeping an open mind. If you are expecting only one thing to work, you will be disappointed.
I agree with Mary. Too many narcotics and then you fill your opiod receptors, and the narcotics backfire. I think that might be part of your problem, though I am no doctor, so please don't take offense. Also, as hard as it is, a little bit of exercise goes a very long way. A little bit everyday, and slowly increase your tolerance helps with chronic pain, as it releases endorphins. I know that you ABSOLUTELY don't want to exercise, because gosh darn it , it plain hurts, and makes you feel worse, but I guarantee, it will turn around, and start feeling good. That's why you have to take it very slowly and build yourself up. Perhaps physical therapy can get you on the right track? Also, biofeedback is a wonderful tool, teaching your brain to turn off certain pain receptors, so that you don't feel it anymore. If you go to a University hospital, I'm sure that they can point you in both directions.
The last thing that I wanted to add is that funny, I went to my rheumatologist today, and he told me about a fairly new cream out by a compounding pharmacy called OPC, or Optimal Pain Control. It seems that they have had extreme luck with compounding NSAID's, pain meds, and other medications to help people with osteo arthritis, AND neuropathy. I happen to have neuropathy also, from malabsorption problems, not diabetes, and although my pain doesn't seem to be as bad as yours, darn, it HURTS LIKE HECK! apparently, one of the creams is made for severe neuropathy, and being that it is topical, it won't interfere with the meds you already take. (That was the selling point for me, because I REFUSE to take anything else already) My rheumy has prescribed two creams, one for my arthritis in my hands, and one for the neuropathy in my feet. He said that he didn't believe it at first,but he has had AMAZING results with their product. Apparently you can't just get a script, but the company has to contact you, and work with your insurance, and then they send it directly to you. (Perhaps each cream is made up to work with each individual, depending on their needs?). Anyhow the phone number is 888-482-3972. I don't know if you can call them yourself directly (though the number is listed on my take home directions), but your doctor has to prescribe it to you, so he needs to call and order it for you. I really hope that it helps your neuropathy, as it sounds horribly severe.
I certainly can understand what you are going through with doctors. I too have been kicked out of pain doctors offices, because they are just plain inadequate to deal with really severe chronic pain.
Good luck, and I hope that you will call this company to see if they can help you, and I hope they can.
I read that opana was changing its formula, maybe the new formula is now what you are getting. It changed like oxycontin did. I never took opana but I used to take oxycontin and when the formula changed I did not get any pain relief, I felt like I was in withdrawl and I was due to the change. I called Perdue the manufacturer and spoke with the pharmacist she was great. Frist they removed the fast acting component and the compunds added could be a problem for many. I was one of them. I could not digest it therefore I could not absorb it. I have a hunch that opana has put out the new formula. I thought I read about this upcoming change on this web site but it could have been pain foundation.com. CHeck you pills see if they look different, check with the manufacturer or your phamarcy. Since the oxycontin formula changed I have had a steady decline in funtion due to poor pain control. I am hoping this helps..
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