Chronic Pain

Hello everyone. I'm new to this forum (duh). I've been in the computer industry since 1984 and have worked in animal welfare (in my "free" time) since 1999. I, along with a half a dozen others, started a no-kill shelter 7 years ago and for at least 4 - 5 years of that, I've run and grown the organization from a group of friends to getting our first - then second - facility.

Sadly, physical pain (along with burnout) pretty much ended my being able to volunteer there earlier this year.

A bit over a year ago I started realizing my aches/pain/shortness of breath, etc., weren't "just part of getting old" at 47. So I started looking for answers. I'll tell the "whole" story in one of the other sections, but this past Thursday (9/27/07) I finally received a diagnosis. He listed Fibromyalgia, Osteoarthritis, but the first on the list, which he listed as "primary" was something I'd never heard of as a separate medical condition "Chronic Pain Syndrome".

I knew Fibro and Arthritis (which he seemed a bit surprised to find...), gave me a bunch of recommendations mostly focused on exercise and physical therapy, and sent me home.

I wasn't overly surprised, or particularly rattled by the diagnosis and recommendations. I've felt SO horrible lately that I'd already begun working on "better health habits".

Then tonight I decided to google "Chronic Pain Syndrome". Much to my horror, many of the entries netted down to -at least how I interpreted it- as him diagnosing me as a hypochondriac and it's all in my head or psychosomatic. I feel completely betrayed. They finally give fibromyalgia some credibility in the medical community, so now they have to coin another expression to tell us they think we are making it up and are the cause of our own problem. I guess I should have suspected it when one of the first things I said was "...after a year of endless doctors, tests, meds, I'm frustrated..." and he interrupted and said some "pull yourself up by the bootstraps" drivel about "no, your not frustrated, this is an opportunity..." or some such bs. Now that I've had time to look up this diagnosis of Chronic Pain Syndrome, it all makes sense.

He diagnoses me with Fibro and arthritis, but just to make sure I'll probably never be believed by insurance companies or able to get disability should I need it, he lists "chronic pain syndrome" as the "primary" diagnosis.

I'm angry, feeling betrayed, depressed - hmm, all the things they list for people who "create" this chronic pain in themselves. I'm caught completely off-guard and don't know what to do.

I guess that's more than in introduction. Sorry about that.

Anyway, hi - I'm 'ItsAllInMyHead'...

bab

Hello Bab,

Man, I am so sorry to hear about your doc "labeling" you with what some would call the hypochondriac's disease. I am not familiar with Chronic Pain Syndrome, but I know all too well, the feeling of being labeled as a "histrionic" personality, as well as having to deal with migraines for most of my life.

Doctors just assumed I was looking for drugs to get high. It wasn't until one time that I screamed at them I was in pain - that I didn't want any narcotics; I just wanted the pain and nausea and sensitivity to go away - that they listened to me. That time, the ER doc gave me a shot of something that put me out for 36 hours. I didn't ask for that, but when I woke up, the pain was gone - at least for the time being.

You know, you don't have to take that doctor's diagnosis, lying down. You can always go to another doctor and request a second opinion. Try finding someone who is sensitive to the "invisible chronic pain disorders" - someone who recognizes that you can have unseen pain and that it is very real, and not just something you made up in your head because you are enamored of visiting doctor's offices all the time. I do think certain doctors flatter themselves way too much. It isn't like we don't have better things to do than to spend time waiting in their offices, for a chance to see them.

Today, we migraineurs have many more options for drug therapy, such as the beta blockers and the triptans. I have also had great success with acupuncture. Several years ago, I had a round of acupuncture - 4-5 visits within a two-month time span. The results? I went for an entire year without a single migraine!! I would strongly recommend it for your chronic pain. What have you got to lose, other than some additional money? If it works for you, it is so worth the cost. From what I understand, many insurance companies will even pay for acupuncture. It is definitely worth investigating.

I wish you the very best in getting this taken care of. I am so sorry for the terrible experience you had with this condescending and patronizing doc. Don't let him be the say-all, end-all. I have found an incredible ally in my psychiatrist, who is open to hearing about any kind of health problems I am having and making recommendations to other docs I see. Perhaps, you can find an ally in one of your other doctors.

Let me know how you are doing. I would like to know how things go for you. You deserve to have some relief from your pain - not to be told it is all in your head!

Kay

Hi Bab,

Welcome to ChronicPainConnection. I hate that you have a need to be here, but hope we can help you with information and encouragement along the way.

I'm so sorry to hear about your experience with that doctor. I only recently heard about Chronic Pain Syndrome myself. Like you, I suspect since fibromyalgia now has so much research proving its valididy, doctors who want to assign a psychological tag to many people in chronic pain are turning to CPS. While there may be something called CPS, I wouldn't think it should be a primary diagnosis unless there is evidence of a history of significant psychological disorders or drug/alcohol addiction.

The first thing I would suggest is finding another doctor. The second thing is not to tell other doctors you see of the CPS diagnosis. Don't even put that thought in their heads. If another doctor tries to give you the same diagnosis, ask him to give you the reasons why he thinks that is your problem. You have a right to know why you are being given a particular diagnosis.

Did your doctor do a tender point exam to determine that you have FM? If so, then the diagnoses of FM and osteoarthritis should sufficiently explain your pain without adding the CPS tag. If you haven't had a tender point exam, the first thing I would recommend is finding a doctor who can do that –– probably a rheumatologist.

You're doing the smart thing in educating yourself about these illnesses. The more you know, the better able you are to work with you doctor. I hope you're able to find a doctor who is willing to work with you as a team to find the best treatment plan for you.

Please keep us informed on how you're doing and let us know if there's anything we can do to help.

Thanks Kay and Karen. The doctor I went to did not - to my knowledge - do the trigger point tests. If he did (he was poking around a lot) he never explained what he was doing. I also would expect a doctor to say something like "well, you have about 10 of 18 trigger points with pain. Usually a diagnosis is made at 11, but..." or something. I didn't know that he "diagnosed" fibro until he handed me the just dictated printout of the "Patient's Program". I saw "CPS (Primary)" at the top, but those three words fit, so I didn't worry. Next was fibro, so I said "I have fibromyalgia???" His response was "FM is just another word for over 6 months of chronic pain, insomnia..." and one other thing that I space off. Depression or anxiety maybe?

The saddest part is, while I knew nothing about him first hand, he had recently done community presentations on Living with Fibromyalgia and Living with Chronic Pain. So I mistakenly assumed he was "sympathetic" (well, at least not "blame the patient"). I guess I should have been wary when he told me, just in passing conversation, that the attendees at the Living with Chronic Pain presentation "probably didn't like [him] much"; he told them it was up to them to cure themselves, in essence.

After a couple days of being really upset about the whole issue, something just clicked an I wrote him off. Him, not some of his suggestions, which were good - shoes a bit higher to support my ankle, paraffin bath for my hands.

Lincoln, where I live, is a fairly small town to start, and even smaller in the medical community. A lot of people go to Omaha, but when your in pain, driving an hour+ isn't appealing. But it may be necessary.

Thanks for the words of support. I've actually been working on vitamins, whole foods, supplements for inflammation and detoxing, and frankly am feeling pretty good. My hands (which I just for computer work and jewelry making) hurt a bit, but capzasin works wonders, as long as I remember not to touch my mouth (or eyes!) after putting it on!

Thanks again!

BAB

Thanks for letting us know how you're doing, BAB. I'm so glad you decided to write off that doctor. It's his kind that makes life so much more difficult for so many patients. From the "definition" of fibromyalgia he gave you, he obviously knows little about it.

I'm glad to hear that your nutritional approach is helping. That's always an excellent choice. It can't hurt to improve your overall health, and frequently it helps improve symptoms as well, as you are finding.

I hope you continue to improve. Please keep in touch.

Wish me luck, I can use it!
Hello Everyone,
I just want to say Thank you to all the people who have shared there stories and there pain. It's a terrible thing to go through. I have suffered for 20 years when I was first told I had Fibro. Maybe be it's been longer...Since then I have delevoped so many other pain related problems I don't know where to start so I won't. The good news is I have an appt at the hospital this Tursday for the trial Morphine pump!!!! I'm scared, I'm happy, I pray to God that it will work for me. I've read your stories and find so much "Hope" and understanding from all of you that it gives me the courage to have this prceedure done. It's my last chance so far since I have tried everything from Holistic Medicine to so many cortizone shots in my back that it is scared from the shots. A special thank you to Karen Lee and to Bob E. who seems to be the father of this website. I want to say I'm sorry to any of you who I may have insulted, I'm so cranky so often
that I expect everyone to answer any of my post within a day and that's not right. I hope and pray that I can become a happier person without all this pain. I have much to be thankful for like my daughter. We adopted her at birth, since the doc laughed at me when I told him I wanted to have kids. The doc said you'll never be able to carry a child to full term. My husband and I just figured we would be a two person family till I got a call from a hospital saying they had a baby we could adopt. She was a 1 pound 13oz 3month premature Meth baby who was abandoned at the hospital in Phoneix in 1995. I flew down the next day to take legal custody of her. When I got there I was so sceared at what I saw. The doc's said don't get attached to this child because she will most likley not make it. If she does live she will have mental retardation, blind, deaf, cerebal problems or all of the above and more. I stood there with my mouth hanging open thinking "Can I take this baby with all of her problems? Should I? Am I a strong enough or good enough person to take such a sick baby?". Over the next 3 months we battled so much to keep her alive. In her incubator we placed our wedding photos and tapes of mine and my husbands voices telling her how much we loved her and how we couldn'nt wait till she could come home to us here in Hesperia, Ca. Me and hubby took turns every other week flying down to see her. After so many months of praying she came home weighing 4 pounds. She ended up being 90% blind from having O2 for so long. Befor leaving the hospt. she had 3 lazer surgerys on her eyes to remove the cyaracts. Today she is 12 years old and perfect in every way, she ended up only needing glasses. She is beautiful, she has a B average and is in 7th grade in private christian school. Her name is Terra and she is the light of my life. How can anyone do better or have better than that? She deserves a mom who can do everything with her, her dad makes up for all I can't do. Maybe with the pump I can to. Please tell me what you went through when you got your pump.
Teresa

Hi Teresa,
Wow, what a story! That is absolutely amazing what your daughter and your family has been through with her. I am so glad that she is doing well!! What a miracle!
There is a really long thread which you have probably seen since you mention Bob.. he is the resident pump guy, answering everyone's questions.
Please let us know how your journey with the pump is.. I am sure many would love to hear how the process is from start to finish. Would you create a thread entitled something like "Teresa's pump journey" or something and walk us through the process? That would be fantastic.
Anyway, if there's anything we can do or any questions we can answer please let us know. I don't have a pump, so I can't help with that.. but we're all here to listen or help in any way we can.
Sincerely,
Stacy

Hi Teresa,

As Stacy said, Wow, what a story! I thank God for blessing you and your husband with your precious little girl and vice versa. You sound like an incredible woman. I'm praying that the pump works well for you and you get some much-needed relief. I hope you'll do as Stacy suggested and keep us posted on how you're doing. I don't have a pump, so I can't be of much help on that subject. However, Bob and the others on that long thread about pumps do an excellent job of helping one another, so I'm sure you'll find someone to answer any questions you might have along the way.

Thank you for sharing your story.

Thank you, Thank you from the bottom of my heart. Really, I come to this site all the time since I found it. You are all such good people it is a privliage to converce with you. (Please forgive my spelling.) What a comfort to have real people who live with this horrible pain and who can understand. I would be happy to tell my story about the pump as I go through it. It's the least I can do, I'm not very good with writing but I will do everything I can to educated through experience. I will start or try to start the post you suggested. Thank you,
Teresa