New Pain doc?

If so, call him and ask him what to do. My neuro is my main pain controller except for emergency situations.
Also, I always carry a one page summary of my ‘conditions’, their onsets; surgeries and other issues. Then an extensive list of the medications/supplements I take daily and another list that is to be used/consumed as needed.
Lastly, this sheet includes all my docs, their specialties and their phone #’s.. That way, in emergencies, any knows who to call about which whats…
That way, IF I’m in serious pain? I don’t have to remember what med’s I’m on or the doses, etc. A new doc comes in for consult? They’ll ask me..and I’ll say ‘See the list’.
You likely do need help with the pain, and I start with your neurologist to help you get that help you need. Good luck!

Look further down this CIDP Forum posting for “Pain Pain Pain”. Discussed some of the issues you are encountering. Primary care doctors are afraid of dispensing narcotics so only just a few specialists now do it. Neurologists and Phydiatrists (Pain Management /rehab doctor) do.
Ask you other doctor who’d he’d recommend for you to see.

Good website is
Has Forum like this one and good for asking questions about pain meds/chronic painful diagnoses.Sends free newsletters too.

I don’t know about TX but in CA primaries will not prescribe pain meds except temporarily please get a referral to a new pain management, try to screen the office procedures before you go. With CIDP the pain docs were not so reluctant to give morphine, but honestly it’s not as effective as oxy. As I’ve mentioned in the pain, pain, pain thread my daughter’s pain is not controlled with just morphine, ms chontin which is the time release version, she needs other pain meds with it, that’s where the problem comes in. They don’t like to prescribe more than one. They DON’T GET IT. But we keep trying. Some else’s pain is very, no impossible, to evaluate. We are on 3rd pain doc. One of them sent us on our way over a year ago and a snippy young resident told us that ‘primary care can write these prescriptions, we don’t have people come in just for prescriptions’ that was County hospital here in good old overpopulated LA.

Please go to another pain med doc, usually you will need a referral from another doctor.

The more I read, the more I find how much these practices differ from State to State.

I live in North Carolina. First my GP stopped perscribing pain meds on a continual basis. Then My neuro said he felt “very uncomfortable” perscribing them. I was referred to a Pain Management clinic. I went through more testing and had to establish another Dr/patient relationship, but now things are fine.

At my last visit the nurse told me “see you in 2 months”. I said, I thought it was 3. She said, nope, every 2 months now. You should feel lucky, it is every month in Florida.

They talk about wasting money in the healthcare system. Then they force me to go to the PM clinic every month, Dr. fee, facility fee, in addition to the Rx fee. Just a wasted 1600.00 a year.

Oh well.

Pain management is always a challenge. Stick to your guns and follow the referrals. If your GP won’t write them, ask your neuro. I can’t imagine your neuro not recognizing the fact that pain can exist with CIDP and other neuropathies. He may be uncomfortable writing the Rx himself, but he should refer you to a Pain Mgmt clinic for some relief.

Good Luck
Dick S

Hi Michelle,

Before I got my poor prognosis, and now they give me ANYTHING I ask for, to keep me comfortable, I went through what you are going through.

But, I got my neuro to do the scripts for hydrocodone. He is the one who understands the pain that goes along with CIDP.

I also get steroid shots into my ankles, knees, and hips with my Rheumatologist, which helps alot.
And now the pain management doctor is putting a steroid into my spine, (it is done in a surgical unit), which helps with back pain.

Perhaps you should ask him/her?

Ken
(KEDASO)

Hello, everyone-

It seems that many threads mention pain with CIDP. I have been living with this for a little over 2 years…very slow progression with IVig and prednisone failure and now about to go on cellcept…but almost no pain. Sure a bit of shocky/tingling sensations, but honestly, the only pain I have is when I actually hurt myself in the affected area (lower legs and feet mostly), like when I tripped over my toes and broke my foot. THAT sure hurt.

So I am wondering…is it unusual not to experience pain?

For those that are wondering…yes, it is definitely CIDP, have had nerve conductivity tests (2) plus an EMG.

I’d welcome feedback. Thanks.
Sharon

I do not have pain with my cidp. I was diagnosed after having emg, nerve conductivity test, nerve biopsy and other tests.

I have 24/7 pain with my CIDP. I have for years.

Thanks for the information, Ella and Ladyg. It seems that the symptoms are unique to each person.

I am very grateful to this forum…I’ve learned so much from many of you.

Sharon

Sharon,

Many people who have CIDP do not have pain, other than the tingly burning type of things.

It does act differently with different people.

The people who do suffer with pain have difficulty getting relief because certain meds relieve some kinds of pain but not others.

Dick S

[QUOTE=mBling]

Do you think it would be out of line to ask for handicap parking tag? I am on the fence about this but I am overwhelmed by the walk in the parking lot let alone the grocery store.

Thanks…..[/QUOTE]

[I]Good heavens, no you wouldn’t be out of line. From what I see there are folks with very minimal mobility problems using the parking tags. Go for it !! [/I]:)

Go for the parking tag! It made a big difference for me, I needed all my energy to get around the store. Nice when you don’t have to expend it all in the parking lot.