I need a hug...or 10

[flutterbee]

I have just gotten back from seeing the pain mgmt doctor. He reviewed all of my records and did a physical exam and told me that I've gone through everything and no one has any answers for me. Which, of course, I knew.

I definitely have fibromyalgia. And he said he can't offer me anything other than suggestions: psychotherapy, hypnosis, biofeedback, massage therapy (when touch hurts?), rigorous physical therapy and rigorous exercise program. He says I have to work through the pain. I am mentally and physically drained just going to the grocery store. My insurance won't cover hypnosis and biofeedback and my only income is child support.

He's a pain doctor and I have a pain disorder and he said he had nothing to offer. Then he said that if he had this much pain, he'd do anything, he'd stand on his head to get better.

I told him that my income is $700/mo and there is just no way I can pay for hypnosis and biofeedback. It wasn't that I wasn't willing to try it; I just can't afford it. I can't imagine rigorous exercise when loading the dishwasher has me in agony. And it was a cane day - my pain is high.

I left the hospital trying so hard not to cry. My throat burning from holding it back. Devon got the car and brought it to me. And I got home and I can't stop sobbing.

Nobody has any answers. No one is treating the symptoms. How am I ever going to get better? I have nothing for pain save a couple icepacks. I did order a heated mattress pad and am hoping it will help at night.

OMG. I feel so deserted.

 

[everywoman]

Heather, I am so sorry. Hugs---without touching your too much.

 

[gcvmom]

Oh Heather, I'm so sorry! Here is a ginormous pain-absorbing {{{{{HUG}}}}} that I wish would give you some relief.

I've been seeing ads for Lyrica as a treatment now for fibromyalgia. Have you seen them?

When do you hear back from Mayo?

 

[Critter Lover]

Soft Hugs to ya Heather! I hope an answer comes to you soon for what will help you get through life with the fibromyalgia. My husband has a female co-worker that has it and she has been enduring some pain as well. She ended up retiring early because of her pain getting worse plus she is taking care of her elderly mother. Maybe you should check in to Lyrica like gcvmom suggested to see if it will work for you.

 

[Josie]

I am sorry.

I don't get how a pain doctor can have nothing to offer. I thought they were for people who have pain, with or without a diagnosis, and need to tone it down.

Hugs.

 

[flutterbee]

Thank you so much for the hugs. I'm an emotional mess right now.

Re: the Lyrica. I tried neurontin and it sent me into a black depression and I was suicidal after just 4 days and on the lowest dose - one of those "unlikely, but serious" side effects. Lyrica is the same thing as neurontin, it just works at a lower dose. The only way I will try it is if someone can stay with me. It hit so fast - like a truck. The thought of trying Lyrica after that terrifies me.

 

[hearts and roses]

{{Heather}} I'm so sorry for your pain and your Dr's response.

I don't have fibro but difficult child does. Chiropractic care really helps her a lot! The initial 2-3 visits are painful but still help her feel better and after those then it eases her pain quite a bit. Does your insurance cover chiro visits? I hate not being able to make any really good suggestions.

 

[Star*]

hug
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hug
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hug

 

[KTMom91]

Heather, I'm so sorry. Sending soft hugs with nice fluffy pillows.

 

[SearchingForRainbows]

Heather,

Is there any way your insurance company would let you see another pain management specialist? This doctor sounds like a quack!!!

When are you supposed to hear back from the doctor at the Cleveland Clinic?

I'm just so very sorry you're suffering so much - I wish I could do something to help you!!! Sending zillions of hugs... WFEN

 

[DammitJanet]

heather....Im so sorry. I know exactly how you feel. I havent been posting lately because I am in such a depression and the doctors are ticking me off. I have walked out of 3 doctors recently and I think I have a broken neck but no one will even look to see.

If I could get to Ohio I would. Maybe the first of the month? I need a new tire before I can drive.

 

[flutterbee]

A broken neck, Janet???? What happened?

 

[Ropefree]

wythersgrace: I noticed that you need one more cyber hug to meet your ten hug goal.

HUG.
If this person is professionally unprepared himself then can you simply go to another clinic or even physician in the clinic? What is his specialty? ORtho, nuero, general medicine, physiatrist?
The fact that you reacted to a medication that is a "small percent risk" is also an important information piece that a physician may have to research to learn what this information indicates more specificly.
It is a sort of indifferance that some people bring to their chosen profession that results in loss of opertunity to do anything useful.
Have you tryed valerian tincture for sleep? It is over the counter at health food stores. It may not 'fix' your malady but for me the lack of sleep wears me down so much that I am intolerant of the pain and the limitations of my condition and that leads to a down ward spiral that I fear is the root of your dispair now.
Yes going to a chiropractor who has good hands and has taken the profession to heart may offer relief and lead to some improvement. yet the problem may be that you are not in a position to pay out of pocket and the insurance you are reliant upon is excluding the type of treatments that may work to relieve some of what is so hard for you at this time.
The compexities of chronic pain are that the body is not moving in the full range of motion and will have MORE PAIN as the body needts to streach and to retract to be healthy and pain free.
No being able to tolerate touch and unable to invision that massage will offer relief is a scarry place. There are so many differant meathods for reteaching the body to relax. i use one that helps me and has helped others that you may attempt on yourself at your own speed and in your bed or anywhere. Just let me know if that is of interest and I will descibe it for you.
Frankly the allopathic practioner who lacks a curiousity and the honesty to interact and learn from the healing arts of others is just an egomaniac. these people do know and have met folks who they are well aware have found usefull treatments that they are not doing the science to rule out or rule in the merits.
One physicain I admire I went to one day when my jaw was off kilter. My teeth were not matching up and I could not close my mouth. He washed his hands, put on his gloves and did a very gentle examine and then said this. I could send you to a TMJ specialist I know. But I have a feeling my x-wife could give you the result you are looking for.
She was this tiny tiny woman and she massaged my head and face and neck and i felt some relief. Then i went back the next day for a full body massage and she was fiersely stronge that tiny woman...and there was some pain type sensation involved but at the end of the day I was jawing like that never happened and i had not another problem with it after that.
Hot tubs are also a choice. Not the hot bath tub, the hot tub or hot springs where you are able to move around and let the body naturally relax and move in its normal range.
I do not have fibermyalga and I have known those who do. I have chronic pain and I am so limited that I do know the social recriminations first hand and the indifferance such as what rings through in the thinking process of the nit-wit physician who offers your "pretentiousness' and not help. If I were him I would look for another job that racks in bank over hot air that did not rely on neglecting his profession to do so. What that may be, i really do not know, but as a member of the society we share i am disgusted by the incompetent physician who is paid to "know not what to do" i think that when a physician does not attempt the tests that result in a helpful diagnosis and does not provide a treatment that is acceptable and does work to treat the malady that more often than not he is morally, if not professionally, obligated to also not charge for his waste of the patients time.
Clearly access needs to increase, practisioners need to CARE and give a damn and not leave physically ill (and that includes the brain and teeth) to "get worse" to act.
business is a human activity and therefor is best done with a heart in tact.

wyntersgrace: i am wish that my cyber hug was not also emotionally attached to how angry I feel when people are neglected. i hope that you do keep looking and find the aswers

 

[Hound dog]

Many soft and gentle ((((hugs)))) Heather. Any chance of a 2nd opinion? How can a pain management specialist not have any answers for your pain? That's ridiculous.

When do you hear back from Cleveland?? Maybe this guy won't do anything without a more solid diagnosis to work with.

And Janet........What happened to your neck?? Hope you're ok. (((hugs))) for you too!

 

[Suz]

My insurance won't cover hypnosis and biofeedback and my only income is child support.

Heather, with your health issues, surely you qualify for disability? Or the kids- do either of them qualify for services to help augment your income?

Do you have a skill you could use to barter services? Biofeedback and emdr are both long-running programs but hypnosis isn't. I tried it when I was trying to quit smoking and it was a two-session deal....one to get it going and a follow up.

...just thinking out loud...

Hugs,
Suz

 

[Big Bad Kitty]

hugshugshugshugshugshugs

 

[TerryJ2]

Ohhhh, soft, gentle, warm hugs. {{{{{ }}}}}

 

[ML]

(((((((((((((Heather)))))))))))))))))))))))) times infinity

 

[flutterbee]

You would think I qualify for disability, but when I talked to my doctor about it last she danced around the issue. She has stated that I'm disabled, she has gotten me into various specialists, tried to get me into the NIH program and got me into the Cleveland Clinic. I'm meeting with her on Thursday to talk about this, among other things. With no diagnosis and no treatment, it's not like I'm going to miraculously cure myself.

As far as psychotherapy - it's not going to take away my pain, cognitive issues or fatigue. He just assumed that since I'm having these issues that I'm having a hard time coping. No more than would be expected. I'm really skeptical about biofeedback and will have to look into it more. I don't get the hypnosis thing. I'll be willing to try massage, chiropractor and gentle PT - rigorous would incapacitate me for days. I've read about treatment for fibro and biofeedback and hypnosis weren't mentioned. And if I do have chronic fatigue also, the last thing you want to do - according to the CDC - is any kind of rigorous activity.

You know, I'm just sick of getting so many different responses from doctors. First, it's Chronic Fatigue. Then, no it's your heart. Then the heart issue is genetic, then it's not cause I don't have enough of a family history. Then pain returns and it's fibro. Then it's not - with my symptoms and my heart disease it has to be connective tissue disease. Then I see a neurologist and I don't have balance issues because I caught myself when I fell over 3 times and he tells me to see a rheumatologist. Then I see the rheumy and it's fibro. Then I another rheumy and it's not fibro and I should see a neurologist. I have. Oh, then try an endocrinologist. Endocrinologist thinks I need a rheumatologist. See an audiologist and I do have balance issues. Go to the Cleveland Clinic and it's fibro and she wants my eye doctor to do a tear test to check for Sjogren's. Eye doctor stands there and tells me that it's stupid, that it doesn't tell you anything, that you can't use it as a single diagnostic test, it's a waste of time, but I'll do it if you want to, brings out medical books to prove to me what he's saying even though I'm not questioning it; I'm just trying to follow doctor's orders. And I should have heard back from Cleveland Clinic doctor this past Friday and haven't - left her a message.

And throughout all of this, I'm left making decisions that I, as the patient, don't have the medical knowledge, training, education to make. When I told my doctor that I just want someone to tell me what to do, she *asks* if I want to see an orthopedist. I don't know. Do you think I need to see an orthopedist?

So, yet again, *I* will be the one doing the research on therapies, medications, whatever for this. I should be billing them rather than the other way around.

 

[trinityroyal]

Oh Heather, I'm so very sorry.
Sending many soft and gentle hugs.