Venting!
 

Hi friends, I just need to let off some steam. I called my PM doc about increasing or adding something that would help reduce my ever growing pain. I know that there are many meds out there that could help, but the doc seems almost afraid to prescribe them. Once again he prescribed percocet, which I have taken for many years now so that it is not very effective. I think that the government cracking down on these doctors that run pill mills are making legitimate doctors afraid to prescribe pain relieving medications that could potentially help. I am just so frustrated I don't know what to do. Meanwhile back at the castle I wait for the slow wheels of WC to approve treatment. Thanks for being there, Lisa:(

I hear ya
 

Lisa; I hear ya there,,,I had problems the same way,,,,You can be very forseful with the P.M and demand stronger pain meds or look for another Doctor. I had to search for 3 years before I found one who A.) understands and B) is willing to make an effort to have a sword fight with this demon and win. Don't give up hope. I'm sorry for your pain and hopes it gets reduced soon. Sometimes docotrs need to be pushed and reminded since your paying the bill,,he/she works for you. Keep safe and feel better soon...mellowguy

I'm sorry Lisa......I literally feel your pain on that one !

I've been seeing lots of Michael Jackson stuff on tv as it is the one year anniversary of his death. At age 50, he could dance through entire concerts yet can convince a doctor that he needs anesthesia to sleep......and we can't get decent pain relief to lead a semi normal life. Grrrrrrrrrrrrrrr

Lisa , That is indeed troubling . Not sure how W/C works in your state but do you have the option of possible changing doctors ? In Fl you have a one time change provision . I was able to change one of my doctors who was not as proactive as I liked . My W/C attorney had the list of local docs for various practices and he also had a pretty good insight into their practices and how they handled these situations . This was a godsend as the Doc I was switched to has done a 180 in the positive direction with my overall care . Hope you are doing better and take care !

BOO!!!

I have had HUGE trouble finding a good PM. I think this one is my fourth or fifth. I love him! He doesn't listen to his peers when it comes to my pain and he's willing to try different things (off the wall stuff), but I trust him and his philosophie's (sp?).

The most important thing is that HE LISTENS. He once told me that he understands RSD so well because he had a bad case of Shingles. He knows the pain and the inability to escape from it. YAY for me! (sorry to be mean, but FINALLY someone can relate!)

I've been seeing alot of MJ stuff on TV too. What about Farrah who struggled for so long with cancer. The media even forgot to honor her during the awards show. Kinda like us silent sufferers.

I would much rather prefer to suffer in silence than to make a fool of myself just to get the attention. I am so glad to have each of you here with me. I don't wish this beast on anyone; but it is good to have someone who can relate.

Wishing you all a peaceful and pain-free night/morning.

Happy Summer!

Kim

Breath
 

Breath deeply my friend. This shall pass and you will find relief...

I find I need to remind myself this all the time because I have short shallow breathing due to my pain.

The following is from Dr Andrew Weil's site and they are good exercises to help us through.

[QUOTE]Exercise 2:
The 4-7-8 (or Relaxing Breath) Exercise
This exercise is utterly simple, takes almost no time, requires no equipment and can be done anywhere. Although you can do the exercise in any position, sit with your back straight while learning the exercise. Place the tip of your tongue against the ridge of tissue just behind your upper front teeth, and keep it there through the entire exercise. You will be exhaling through your mouth around your tongue; try pursing your lips slightly if this seems awkward.

* Exhale completely through your mouth, making a whoosh sound.
* Close your mouth and inhale quietly through your nose to a mental count of four.
* Hold your breath for a count of seven.
* Exhale completely through your mouth, making a whoosh sound to a count of eight.
* This is one breath. Now inhale again and repeat the cycle three more times for a total of four breaths.

Note that you always inhale quietly through your nose and exhale audibly through your mouth. The tip of your tongue stays in position the whole time. Exhalation takes twice as long as inhalation. The absolute time you spend on each phase is not important; the ratio of 4:7:8 is important. If you have trouble holding your breath, speed the exercise up but keep to the ratio of 4:7:8 for the three phases. With practice you can slow it all down and get used to inhaling and exhaling more and more deeply.

This exercise is a natural tranquilizer for the nervous system. Unlike tranquilizing drugs, which are often effective when you first take them but then lose their power over time, this exercise is subtle when you first try it but gains in power with repetition and practice. Do it at least twice a day. You cannot do it too frequently. Do not do more than four breaths at one time for the first month of practice. Later, if you wish, you can extend it to eight breaths. If you feel a little lightheaded when you first breathe this way, do not be concerned; it will pass.

Once you develop this technique by practicing it every day, it will be a very useful tool that you will always have with you. Use it whenever anything upsetting happens - before you react. Use it whenever you are aware of internal tension. Use it to help you fall asleep. This exercise cannot be recommended too highly. Everyone can benefit from it.

Exercise 3:
Breath Counting
If you want to get a feel for this challenging work, try your hand at breath counting, a deceptively simple technique much used in Zen practice.

Sit in a comfortable position with the spine straight and head inclined slightly forward. Gently close your eyes and take a few deep breaths. Then let the breath come naturally without trying to influence it. Ideally it will be quiet and slow, but depth and rhythm may vary.

* To begin the exercise, count "one" to yourself as you exhale.
* The next time you exhale, count "two," and so on up to "five."
* Then begin a new cycle, counting "one" on the next exhalation.

Never count higher than "five," and count only when you exhale. You will know your attention has wandered when you find yourself up to "eight," "12," even "19."

Try to do 10 minutes of this form of meditation/QUOTE]


Wishing you wellness and peace.

MsL

Hi Lisa,
I agree with the others that it might be time to find a new doc who is willing to give you the full attention and treatment that you need!!

Before jumping ship, you may want to insist that he have a conference with you, so that he can hear you and listen clearly to your pleas for help, and to talk about the fact that the percocet may no longer be adequate..
If he is still unwilling to help you, then it might be time to find another doc who attends to you!
In the meantime, Mslday has some good suggestions for ways to reduce your pain and anxiety through breathing and relaxation...It does help!
don't give up, friend!
Many hugs,
hope4thebest :hug:

hi lisa im new to this forum but they are putting a big amount of pressure on doctors precriping pain meds .if you need them i dont see a problem

Hi Everyone,

I'm dealing with this also. I have tried vicodin and percocet with no help at all. It was like I didn't take anything. I have been taking oxycodone with varied results.

I have had extensive conversations about pain medications with my PM. Generally, the motto is that if you don't take pain medications more than twice a week, you're not going to become addicted. I only take pain meds for when I have a flare. So, if you are in pain, rest assured that if you need them, you're ok if you only take them twice a week.

I talked with my pm doctor and said I would gladly take regular tests to show that I'm not addicted. That's not the issue. The issue is that I am in pain and I need something that actually works. It's very hard for them to understand the level of pain that we are in.

dealingwithtos,

OMG!!! I do not agree with your statement at all. I would be in a loony bin or most likely dead if I could only take pain meds twice a week. I take a steady dose every 8 hrs. Like I said, if I didn't I would probably be dead by having committed suicide by 2005. The burning pain in my feet would be a 10++++............ It can hit a 10+ even on pain meds..........

I am not addicted either. I have a tolerance to them, yes, BUT I am not addicted. Additction & tolerance are two completely different things. I have never once been 'high' taking them either. If anything, my thinking is much clearer because now I don't have that never ending 10+ pain going on. Am I out of pain completely? No. I still have pain. Pain meds have only made me comfortable enough that I can deal with the pain I still have until it flares.

So that 'you can't get additected if you only take pain meds twice a week' is bs. Because I take them more often, but I not addicted.

DebbyV

Also, about that 'addicted' stuff....

A person NOT IN PAIN, OR ABUSING THE MEDICATION, is when the addiction come in. When a person buys them off the street for as a habit. When a person takes them and lies about their symptoms to get the medication because they thrive for taking more and more to get a high when taking the prescribed amount doesnt work.

That whole 'twice a week' number i believe is false. People look at the addiction differently. Having RSD is a 24 hour a day 7 day a week job. Having this pain, we need the medication. It isnt a choice. So if addiction is in your brain, then you need to remember to take your medication as prescribed, and dont suddenly get off of it. It is possible to get off any medication over time.

When people say, 'if i take it everyday and i just stop taking it and i get withdrawls, then that means I am addicted and I dont want to take it.'
#1 I say, your pain may not be as bad as you say, I can say, most of us would do anything for our pain.
#2 Its just like anything in life, anything with your body. If you were to take food from us in one day, we would have withdrawls too.

Medication for us is like insulin for diabetics. I know for me, its the only way I can get up most days. I don't know where your doctor got that 2 times a week thing, but what happens the other 5 days when you have pain?? Maybe for someone else they can just take their medicine 2 days a week, but I know without a doubt I cant only take my medicine 2 days a week.

Lisa,

I agree also. Find a new doctor... Its not fair for you to continue to have to suffer. Narcotics actually make some of my pain worse. Have you tried neurontin/lyrica? or Tramadol? or cymbalta to help manage with the rsd? pr any of the other medications us rsders take??
Hang in there... try to find another doctor who isnt afraid to prescribe medication. If the doctor knew better, he would prescribe to make the patient better, not withhold it and make you suffer by not giving you medication therefore making you worse... If he knows what RSD is, he will prescribe you medication to relieve you pain, not just up your medication now. I know many of us take a 'cocktail' of medications to help us manage everyday.... Hang in there :)

RSD is one of mankind's most painful diseases. We don't allow our pets to suffer constantly, so, why on earth would a doctor allow a patient with RSD suffer continually? It makes no since to me at all. My wife has RSD, for four years she went through the same barbaric treatment from chicken shite doctors until I raised holy hell everywhere we went until we found a doctor who did not hesitate to do her duty and immediately tackled my wife's pain first and foremost. Who cares about addiction when one is suffering severe pain 24-7? Hannah is correct by far. There is a big difference between an addict and someone who is dependent, big big difference. An addict sits around in a daze waiting for the next fix. A person who is dependent is allowed to function in society. A very big difference and pain doctors should know this. If they don't they are lying.

Hi Hannah, Thanks for your reply and everyone else who jumped in to help. I was taking 90 mg of Cymbalta everyday until WC decided that it was not going to pay for it. I recently had a hearing where it was ruled in my favor to approve this medication, but when I was at the pharmacy today, it did not go through. I am not able to take Nuerontin due to extreme side effects. Finding another doctor is really not an option. I live in a very rural area and I have only found two. The first one did not work out, and I like this doctor but his hands are tied due to this being a WC case. Everything that he has wanted to do has resulted in very long delays and hearings. The WC system in Ohio is set up to the benefit of the employer and my company is self-insured so that adds even more complexity. I think that my doctor may have prescribed the Percocet simply because he knew that this was a drug that had previously been covered and I am leaving to spend time with my daughter. I do take a cocktail of various drugs--don't want to go into detail here because I would be easy to find in this small community. I am hopeful that the warm S.carolina weather and the peacefulness of the beach will be beneficial. Thanks to all and I hope everyone is having a great evening, Lisa

Mslday.

I like this. Tried it for a few nights and slept like a kitten (new meds helped too). It really feels good to breathe. I never realized how much I stopped breathing when I am tense.

It's pretty awesome once you get the hang of it!

Thanks for sharing!

Kim

Lisa.

My w/c just dropped me and all of my coverage. I was hurt in Delaware (though I live in Maryland). I have been denied all of my meds and treatments recently. I have a good attorney and I submit everything to them for reimbursement. ($.50 a mile for travel to my doctors and treatments, total reimbursement for out-of-pocket meds and any and all thearapies which help me (a cane, crutches, heating pads, epsom salts, vitamins, etc.)

They denied me because their doctor feels that I can go back to work. Four hours a day, sitting only. No use of my arms or legs, no walking, etc. etc. Plus I must disclose to them that I am on narcotics, medicinal marijuanna and that I get epidurals that render me unable to walk for a day or two afterword. Oh, and I will fail the drug test!

I am on my fourth or fifth pain doctor. My last one treated me like a junkie. And I believed everything bad he said to me. My new one is a "breath of fresh air". He LISTENS and truly wants me to be better. He is willing to take my thoughts and questions to heart and research them. He is not afraid to go against the grain and trust his own instincts instead of relying on text-book stratagies.

I am very thankful for him. Please seek out someone in which you can trust and speak honestly to. I am from a rural area also. There are really good PM's out there! (see the post from Jim King...).

Keep us posted! Good luck!

Kim

Lisa and Kim , Wow I am sorry to hear of all the problems you (and everyone) have had with W/C and docs. I too am W/C with a self insured employer and I have indeed been very fortunate with my care . I am most thankful for my pain mgmt. doc. who was the one to diagnose me with RSD . I imagine if I had gotten a doctor not familiar with RSD my dealings may have been much different . Take care !

Dear Kim -

As one who recently got SSD approved on the first pass (with Medicare, thank you) I can say, having spoken to a number of people in positions of authority, and indeed it's clear as a bell in the Social Security Ruling on October 20, 2003 that's generated some discussion of late http://www.24-7pressrelease.com/pres...ims-157760.php, that the key variable in filing is going in with doctors who will support you with strong reports and close observations in their files.

If there is anything I have learned in 9 years with this, it's that no good ever comes of having a doctor who is not fully supportive of you. Hanging in there only leads to more problems in the end. Otherwise, life is just too short.
Find someone you like, and cultivate the relationship: baked goods at the Holidays never hurt.

Mike

I agree...
 

When I was doing my ketamine evaluations prior to treatment the phyciatrist I saw always said the same thing. Addiction or someone who is an addict is very different then someone who takes pain medication due to a illness.

And they are cracking down on doctors who RX pain medication. But I think the PM Doctors are save because that's what they do for a living. I have heard some crazy stories of orthopedic surgeons depanding that patients get off all pain meds. prior to any surgery.

It's all getting a little frightening....

Thanks Mike! I was just denied SSDI (knew it would happen). I did recently find a great PM who is my "Mad Scientist"! He doesn't stick to recommended therapies.

I just started getting epidurals with Lidocaine and he gave me Ketamine in the last injection. Today he gave me Ketamine to take orally every night. I have the syringes here at home for about a month's worth. I simply spray the medicine on the roof of my mouth and hold it for a minute before swallowing.

I am also very impressed that he trusts me enough to have extra meds on hand. My other doctors look at my like I'm a junkie when I asked them for more/different meds. The Ketamine he gave me is not available at any pharmacy so he orders it from his supplier and measures it out for me.

I'm glad you got approved for SSD on the first try. I'm sure it takes alot of your worries away, which will lower your stress and help with the pain.

Have a great holiday weekend!

Kim

p.s. Nice pic!