Debi

I rarely visit this forum but wanted to let you know I'm thinking of you and hoping your doctor gets a clue and gives you the meds you need.

I can only imagine how frustrating this is for you.

I see the weather is warming up down your way. It's nice up here where I am but I can't help but get a little apprehensive of the "tornado" season we always have here every Spring. I'm sure you know what I'm talking about!

Hoping you get some relief from your pain when you visit the doctor later this month. You take care sweet friend!

Yes! Have your daughter go with you! It helps so much to have someone else there to back up the evidence that you are still in a lot of pain and that you are not affected mentally by the medication.
My PCP has known our family for 15 years, since he opened his practice, or he said he would never have prescribed this much medication, but a pain doctor should be comfortable with even higher doses as they are sometimes necessary.
We see each other every month and make a lot of small talk since there are rarely changes so he knows that I am not in "La La Land".
When I had my minor foot surgery the anastheisiologist came in and introduced himself. He fastened on my accent and asked where in NYC I was from, I told him I was from Philly, not NY. We proceeded to have a rapid fire conversation about the pros and cons of homeschooling, as I said I had homeschooled my 5 and was finishing up with my youngest. At the time I was surprised that he spent so much time with me and was so interested, asking very detailed questions. Later I wondered if he was trying to see how mentally sharp I was after seeing my medications list.
Everything I have read says that it is very important in pain management to have family support, you should never go by yourself if you can help it. I asked my doctor why so many of the new doctors I meet with are put off by the morphine. Not all, most who are familiar with the pain of an advanced neuropathy or neuromuscular disease, are fine with it but some react badly, acting suspicious and asking strange questions. "Why are you taking that?" seems like a particularly idiotic question from a doctor.
He said that they are trained in medical school to be suspicious of people on pain medication, and it is a prejudice that is very strong. They are also afraid of losing their license although such cases are very rare.
This is so maddening because I really believe a higher dose would help you. i have read that if methadone is tried and poorly tolerated at first sometimes you can return to it later without the side effects, but it seems stupid not to continue working with the morphine.

Debi,

It never hurts to give the pharmacist a call or stop by next time you're close by and talk to them about the equivalent dose to the BuTrans dose you were taking. Then at least you can go into your next appt with the PM armed with the proper information and can speak to him about more appropriate dosing. He may change his tune if you go in telling him you know what the equivalent dose is and you would like to be prescribed the equivalent to what you were taking...not less.

I'm so sorry you are going through this. Two weeks will be here soon...although not soon enough for those in severe pain.

Please keep us updated.

Debi,

It is insane your PM would rather have you take methadone instead of raising your dose of Morphine 15mg which is extremely low to 30mg's.....Actually that should probably be that dose 3 x's a day at regular intervals. He can lower your Oxycodone (break thru ) to 5-325 or 7.5 -325 instead of the 10mg's you are taking. (I am taking the 7.5-325 often cutting it in half.)

I'm glad your daughter is going with you; just hate that you have to wait until the 24th of March.

If your PM were a Primary Care Doctor I could understand his not wanting to increase; but a PM's first duty is to help reduce pain to a manageable level. For him not to even give you a chance and tells you this is too strong for you is unbelievable and very upsetting.

So sorry you are having to deal with this "over the top" pain.


Gerry

Hello to all my awesome friends Who never fail to make me feel better

I got so upset thinking about my visit to Dr Chang yesterday I made myself physically sick on the ride up

I had 3 pages of notes to help me with the visit. This time when his nurse pract came in she actually listened to me and relayed all the info to Dr Chang before he came in. My daughter also chimed in which I very much appreciated.

He agreed to increase the ER morphine from 15 mg 2 x's a day to 30 mg 2 x's a day ! He did have to decrease my oxycodone from 10-325 2 x's a day to 5-325 2 x's a day but I was fine with that......really hoping and praying the 30 mg is going to make a big difference.

I cannot even put into words how bad the pain has been. At least I do have confirmation that the SFN has gotten worse and spread as I thought it had.

Dr Chang said I had become tolerant to the opioids which I do not agree with. He was extremely nice and caring....the doctor I knew him to be and I was very happy that I was not going to have to change pain doctors.

He did say if this didn't help he was going to suggest again that I try the methadone but I'm thinking 'positive' that the increase in morphine is going to help me.

I do take someone with me to every pain mgmt. visit because I know it's important to have someone with me and that it be marked in my records and also I cannot drive that far.

Thank you all so much for your support, suggestions and words of encouragement.

Debi

I am so happy to hear the news. Sure hope this will help and be the answer to getting to a more tolerable pain level.

Thanks for the update...let's be positive that this will help reduce your pain.

Debi,

I sure hope this helps. Should he again suggest the Meth; I would strongly hope you can get him to increase your Morphine to 3 x's a day instead of 2 x's. 12 hrs. in between each dose is a long span for the Morphine to stretch out. The Oxycodone will help; but it is just short acting during spikes.

The Meth is often used for those trying to lower their dose of opioids. He has no idea of how this will affect you. You appear to be handling the Morphine. It is perplexing his wanting to give you the Meth instead of something that has a good chance of working for you.

Praying this will give you back a more productive and less painful "you".......


Gerry

Gerry....he said that the methadone works on a different pain receiptor (sp?) than the BuTrans or morphine.

Both of my kids have read up on the methadone and they both strongly oppose me trying it.

That coming from Luke, a narcotics officer, speaks loudly to me.

I'm very hopeful the 30 mg will work for me and give me some of my life back. I need that so badly right now.

Debi

Debi, I also think that you should fight the Methadone suggestion. My DH was put on that for his back pain before he passed away (herniated discs and something else that the name escapes me). I have no proof but I truly believe that med had something to do with his heart issues.

After doing some research on it I found out that it was used to help herion addicts come off the drug. WHAT??

I hope Luke might go with you to your next appointment and question the doctor on his knowledge of the med. I'm sure he knows what I'm talking about with the herion reference.