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lost in TEARS AND PAIN
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heavensall2me posted:
HOW DO I EXPLAIN THE FENTAYL 75 MG FOR 72 HRS, AND BREAK THROUGH 10 MG. OXYCODONE DOES NOT WORK, i CRY CANT SLEEP,WALK,. I HAVE SEVERE DETERATION L5-S1 WITH L-5 RUPTURED COMPRESSING SPINAL CORD. I HAVE NO LIFE NOW,NONE BUT MISERY. SHE WONT CALL ME BACK??? SO WED I SEE HER HOW DO I EXPLAIN, THE PATCH BURNS,I AM CONSTANTLY SCRATCHING IT,WHEN I PULL OFF I AM BURNED.THE JELLY IS HALF LEFT. I HAVE ANXIETY THAT HAS ME DISABLED 15 YRS. NOW. I AM SCARED SAY ANYTHING,AFRAID SHE THINK I LIE TO HER. I AM NOT,I AM HAVING MASSIVE PAIN,SADNESS FROM THIS. MY POOR FAMILY STAYS AWAY FROM ME, WHO WANTS A CRIER AROUND.
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annette030 responded:
Why are you afraid to just tell the doctor the truth?

You have burn marks on your skin where the patches have harmed the skin to back up your story, she should look at them anyway, just to make sure they are healing properly.

The main thing I disagree with you about is leaving phone messages for your doctor regarding chronic problems like pain. I recommend you make an appt. and go and see her face to face, and explain what is going on. You will see her on Wed. so just tell her what is going on, you would not react this way for blood pressure meds that were not working, this is not any different.

I would also suggest you see a therapist and maybe try some cognitive behavioural therapy regarding your response to this stress in your life. You may not be able to control the stresses in your life, but you can learn to control your reaction to them. You don't have to be crying all the time, that only makes your pain worse anyway, besides driving your family away.

Take care, Annette
 
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ctbeth responded:
Hi from Connecticut.

I am so sorry to read of your hardships. I agree 100% with Annette- you MUST tell your MD. There are many options that you and your MD need to discuss.

Has surgery been discussed? No one wants to go through a spinal fusion, but if it can give you your life back, maybe it's worth consulting with a neuro-surgeon.

Do you notice that the Fentanyl works better the first 48 hr? I am not using Fentanyl patches now, but I had used them for almost two years. I changed the patch every 48 rather than 72 hr, as do others here. It made a difference to me.

May I offer a brief suggestion in preparation for your visit Wednesday? Perhaps you can write a list of your concerns to discuss with your MD. Try to be calm while you are voicing these concerns.

Please write again,

Bet
 
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end_of_rope responded:
OMG I am so sorry to hear of your suffering but everyone here is right. Be honest, calm, and most of all insistant that these things are real! If your Dr. won't listen to you then find one who will. You have suffered too many years, there is no reason for you to go through this when there is an entire medical community available to you. Keep us posted. Good luck!
Roe
 
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cweinbl responded:

1. Meet with your doctor. Why are you afraid? The doctor exists to serve you. You are the customer.

2. Fentanyl patches rarely work past 48 hours. Many people change them every two days. I had to change them daily, due to a contact dermatitis under the patches. Yes, it itches and turns red. Changing the patch more frequently will reduce the dermatitis. My doctor simply wrote them for daily changes. No problem. Insurance paid. Nothing is as potent as Fentanyl, although you can rotate to something different. Ask your doctor is you can change the patch every other day. You might also require the 100 mcg patch. For breakthrough pain, you might need two 10mg Oxycodone tablets at a time. This is not unusual. Many of us have a high tolerance for pain medication.

3. Ask your doctor for a referral to a comprehensive pain management program. There, you will be able to try dozens of non-invasive and minimally-invasive treatment options. I can reduce my pain by 20% at any time with biofeedback alone. Try acupuncture, TENS, PT, kinesiotherapy, injections, epidural, rhyzotomy, etc. Just make sure that the program offers more than just injections.

4. If all else fails, try the spinal cord stimulator and/or the intrathecal infusion pump. Surgery is required to install and remove the devices. But the morbidity is low.

5. You should accept the fact that your condition may require surgery. You have "disc degeneration, stenosis and compressed nerve roots." Medication will mask your pain for a while, at best. The cause of your pain remains. And if your spinal nerve root at L5-S1 is significantly compressed, leaving it that way will result in permanent nerve damage. You might need to consider a surgical intervention. For that, you should get opinions from two spine surgeons. A spine surgeon is a neurosurgeon or an orthopedic surgeon who has completed a fellowship in spine surgery. These fellowship-trained spine surgeons can often be found at or near teaching hospitals.

Finally, you might wish to review the latest and most comprehensive research covering all major spinal interventions. Read it here: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf .
Good luck
 
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Godslady247 responded:
This sounds like my condition, however my L-5 is compressed and bulging. Thankfully, I have been able to manage my pain with 10mg Vicodin, Aquatic Therapy, TENS and relaxation therapy. It also helped that I have been diagnosed with PTSD from being molested as a child. I understand your pain, but I for one have refused to allow it to control my life. Oxy was suggested, but I didn't want to become dependent on it. I take my meds as prescribed and I try to stay as active as the pain permits. I've realize the more I move, the less the pain has control.
I am not suggesting that living with the pain is easy, but it is possible. I thank God that He has given me strength, because without prayers and faith, I don't think I would be here right now.
Try not to over do it, when you are active, but do move around as much as possible.
AND TALK TO YOUR DOCTOR!!!! If they don't listen, FIND ONE THAT WILL. I have great pain management docs and therapist, so please don't keep the pain to yourself. Remember, what works for others may not be for you. Everyone has different thresholds for pain tolerance.
Be blessed.
 
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Finn2 responded:
I wish I had seen this post when you first posted. I tried Fentanyl patches once. Started on 12.5, they didn't help the pain so they increased it to 25. I was very sleepy, fought to stay awake, it didn't touch the pain, but the worst side effect for me was massive sadness. I felt like crying all the time for no reason and did cry a lot of the time. When I told them that was happening they told me to stop using Fentanyl. Have you told them about your sadness? Perhaps it's affecting you the same way. I've tried other meds and this has not happened, only with Fentanyl.
 
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An_223731 responded:
Suggest change of GP! I had degeneration at L4,L5,S1 with Prolapse which turned out to be ruptured also (discovered in surgery). I had a 2 level fusion 4 1/2 years ago. Unfortunately, I am the 1:4 for whom surgery has not relieved the pain. However I have a friend for whom it did. I am still on the fentanyl after all these years, with oromorph for break thru. My GP is an angel! She listens for as long as it takes, never rushes me, never makes me feel she doesn't believe me. & is always there to support me & my family. My care was shared with the nearest spinal clinc & pain clinic & I am currently awaiting referral back, as we're concerened another disc may have'gone'.I was medically retired due to my condition. I honestly think you need to change your GP, or at least get a 2nd opinion. I know exactly how you feel with the constant pain & the infringement on daily living activities. I too am constantly scratching the constant itching caused by thr drugs. Have tried to reduce meds but have realised that although pain bad with medication, it is unbearable without.Hang in there but definately find another Dr. I wish you well.
 
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cweinbl responded:

Yes, the patch can itch and burn. Yes, the patch is rarely effective after 48 hours. But it provides the most consistent plasma level of the most powerful pain medication available (Fentanyl) and it does so for at least two days constantly. Sometimes you can't have everything you desire.

Nothing is as potent as Fentanyl for chronic pain. Be happy that you can access it. If the patch creates a contact dermatitis, then use a topical steroid cream.

Some of us are delighted to put up with itching and burning, in order to use the best pain medication available. The alternative is to increase your suffering. Does that make sense? Short-acting narcotics do not work nearly as well as long-acting drugs, especially Fentanyl Transdermal.

If you refuse to use a topical cream to resolve the itching/burning scenario, then you can have surgery to implant a spinal cord stimulator or intrathecal infusion pump (both have a 12-month success rate of 40% to 60%).

Good luck.
cweinbl csw2@bex.net
 
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Chaoscat replied to end_of_rope's response:
"Lost in Tears and Pain". I am right where you are. I am still trying to get my head around the pain, It makes you feel like you are crazy and all sorts of otherthings. The drug restrictions in Australia are pretty tight and I was allergic to all drugs except panadeine forte , morphine ( oral as well as patches) and benzodiazapines ( valium). When I went to the Dr. I was faced with all sorts of stigma, as a result of the pain, I wasn't eating, I was anstill am drinking heavily, I weighed in @ 35 kilo's and looked like a drug addict. My pain comes from a broken spine . I am 35 years old and its been 4 years since the car accident that caused it. I have no life, I'm angry, I cry alot . and it turned to inward hatred for myself. The hardest thing was reading the reports, I'd say, if they only knew me, but they dont. I avoid stressfull situations and am learning to take it easy on myself, but that came with time, Since my last physio treatment I havent been able to feel the left side shoulder to arm and my fingers are numb and prickly. I have been back to the DR, they did a stupid follow the pencil, sqweeze my hand push me pull me act and said dont worry keep up the physio. One thing I have learnt and the most important thing you need to know is how to use your voice! Your pain is real. You Have a beating heart and your asking for theyr help. Its especially hard if you are surrounded by idiots with badges.
More often than not I'm on my knee's just begging for mercy. I was diagnosed with chronic pain, post traumatic stress disorder, severe anxiety and depression. Believe me, its hard to get any kind of help when you have a diagnosis like that, but keep going. There is no cure, it's like grief, you just get used to it and instead of feeling like a stranger to yourself and hiding like I did...just breathe, take a step back , acknowledge your accomplishments and start the day knowing that even though its not gone yet, one day instead of being all you can hear, feel and breathe it will be a wimper in the corner. Its only been in the last year that I could shower without it hurting and I still dont have the words to descibe that one lol.
 
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Guyser responded:
I agree with cweinbl with your problem...

I have exactly the same issue with referred pain from the back area, down to the groin & sciatica down my leg to the right ankle. The total disc replacement surgery I had in 2007 was not successful and the neuropathic pain is getting worse and I had to leave work 2 months ago.

I am on Fentanyl 50 patches with 10mg oxycontin plus codeine/paracetamol for beak through pain. I am soon going to go up to Fentanyl 75 patches so hopefully will get 3 days of less discomfort with 1 patch. I also need half a 5mg valium about 3 times a day & this seems to help- especially when having problems sleeping at night.

I am concerned about the addictive properties of these drugs but they simply make me more comfortable without any 'buzz' at all so I don't consider that this is drug abuse. My doctor is concerned but is generally supportive however.

I am seeing orthopaedic surgeon next week to discuss possibility of getting an implantable device, as nothing seems to help the pain & discomfort at this time.

I tried Amytriptyline (sp?) once but it left me feeling 'foggy' so went off it. It did seem to help so you may want to consider that as an option.

The skin redness is part of the deal when wearing patches unfortunately. And yes- I know the angst of having friends/family being subjected to my painful life so now choose to keep quiet about it all.

A psychologist helped but I was already practising the skills she suggested. Reiki helps too but sometimes the pain is just too distracting when trying to 'plug in'.

Good luck- you are not alone...
 
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cweinbl replied to Guyser's response:

I'd like to offer a very slight correction to your excellent post. Addiction is a psychological condition characterized by using narcotics to get high, rather than for pain. It is also characterized by using too much, running out too soon, purchasing it illegally, stealing medication and obtaining multiple prescriptions from different physicians.

Tolerance is a physical condition characterized by requiring ever-higher dosages in order to maintain the same level of relief. When you reach the maximum safe dosage, it is managed by rotating briefly to a different medication.

Dependence is a physical condition in which a patient taking narcotics may have withdrawal symptoms if they stop them too rapidly.

Many people misunderstand the differences between addiction, dependence and tolerance. BTW, the addiction rate among chronic pain patients using narcotics is between 0.27% and 3%. Most of the new research studies on addiction with our population peg the rate at around 1%. Unless you have a prior addiction disorder, you have absolutely no reason to fear it. Here are some new research studies that produced the addiction rates I mentioned above: http://www.ncbi.nlm.nih.gov/pubmed/20091598?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1 and http://updates.pain-topics.org/2011/01/study-finds-low-risk-of-rx-opioid-use.html
cweinbl csw2@bex.net
 
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Guyser replied to cweinbl's response:
great links- thank you cweinbl

I have printed out a couple of copies for my GP and orthopaedic surgeon as they have in the past expressed concerns about what I take for the pain relief.

I live in New Zealand where strict govt subsidies are in place & in fact I 'changed the law' by getting subsidised for Fentanyl patches (currently only prescribed for terminal cancer patients). I have done much research on medical marijuana which is administered by way of a sublingual spray called Sativex.

Have you any information as to whether this would help with chronic neuropathic pain? Apart from the possibility of exploring the effectiveness of an implantable device, I am wondering whether Sativex (or similar) may be effective as well.
 
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alovelyheart replied to Guyser's response:
Gabapentin is not a narcotic and is quite helpful for my horrible neuropathic pain. I was looking for something for the pain I suffered from when I saw this. I read that it is one of the safer medications to take. I wound up with fibromyalgia from the problem that caused the neuropathic pain, so I am in chronic pain, but I can tell when I'm late with my dose of Gabapentin and this type of pain starts to flare up. Since it is not a narcotic, Doctors will probably be more than happy to prescribe it ; ) I hope you all find yourself in less pain than yesterday.


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