Back From The Cleveland Clinic Chronic Pain Program:

[LindaJoy]

Hi, everyone,

I'll try to make this short. I haven't been here in awhile. Last I wrote, I was still at the Cleveland Clinic, in their chronic pain program. There, I learned many, many things, foremost of which, if you just ignore your health problems, they'll go away, or at the very least, they won't matter as much and you'll be able to function just like any normal person. Ha! The doctor who headed the program said he's treated 10 people with POTS since he started the program in 1979, and he found that "if we just get POTS patients up and moving, their POTS usually goes away." Well, I was up and moving for three and a half weeks, am still moving, and my POTS is still rearing its very ugly head.

Anyway, I came home, still not feeling good at all, though better, with ear infections (I was not allowed to complain about my pain, so I didn't tell them that my ears were hurting, then found last week that I have ear infections) and am back at a new family doctor for more tests as I'm still not right.

Here are my symptoms. Please, please, look them over and see if you think these are all POTS related, or if not, what you think they may be, based on your own experience or from what you've learned from others or from your readings. Thank you.

--Weakness

--weight loss, even though I eat every two hours

--severe low blood sugar (that's why I'm eating every two hours. I'm still skinny, even though I eat all the time!)

--low blood pressure

--joint and muscle aches

--facial flushing

--shaky legs sometimes

--blurred vision all of the time! It's so bad at times, I can't read

--Other vision disturbances, such as lighting going brighter or tunnel vision

--fullness in head

--fullness in ears

--right eye pain

--headache

--nausea

--dizziness, sometimes feeling as though I'll pass out

--severe hunger at times

--buzzing in ears

--anxiety

--low grade fever sometimes

--rib pain

--chills or feeling hot

--clumsiness

--smelly urine

--tingling, especially in my legs

--just feel awful

I've also been diagnosed with fibromyalgia, irritable bowel syndrome, interstitial cystitis (they did help this at the Cleveland Clinic), among many, many other things.

The blurred vision and feeling of fullness in my head bother me the most, but feeling like I"m going to pass out, or die, at times, isn't very thrilling, either.

I'll tell you, too, that I'm now off of all meds except for my Cardizem CD, for my tachy heart. I feel like, in some ways, I'm better than I was before I went to Cleveland, and in other ways, I'm not.

Thanks for reading, and for any advice you have to offer.

LindaJoy

[MotleyLori]

LindaJoy,

I just read your post and don't know whether to laugh or cry. The doctor at Cleveland Clinic must not have read a medical journal since he got there in 1979 for starters. If that "if you ignore it, it will go away" worked most of us would be well by now as we had years of doctors ignoring our vague, but troubling symptoms. Does that work for heart attacks and diabetes also??? I do understand when pain becomes chronic and non-productive that getting our minds off of it is helpful but . . . there are limits to the rule. We have to know when pain is important and when it is self perpetuating, which is not implying that the pain is not "real" pain. I hope you did not have to pay $$$ for the "help" you recieved there. Am I allowed to post these strong opinions here???

I hope your family doctor is meeting your needs and addressing the issues that need addressed medically. I guess that for all of us with a chronic anc confusing condition that there is a mental component but that does not mean that we don't have physical issues. Personally, I feel all health issues are physical as the brain is run by chemical!

Lori

[Sophia3]

Impossible to dx your list of symptoms.

I just want to say SORRY you have such a !#!*#&* jerk doctor. What a true horses rear end to say IGNORE it and you shall heal????????????????????????????????????

That advice STINKS!

[dizzygirl]

wow linda that doc was wrong to tell you that you'd be healed if you jsut forgot about it!

WHEW!!!!!!!!!! where on earth do hospitals come up with some of these docs??

about your sy ptoms... do you have a pots specialist to treat you? you could take your list of symptoms to an ans doc.. and might have more luck with them..

my goodness.. its a shame waht med professionals tell us. thank god we can think for ourselves and second guess there opinions..

[Ernie]

Hi,

Did you have to pay to be told that?

When I was a therapist I was saying the opposite: "If you have pain it's because your body is trying to tell you something so listen to it. If you don't listen to it, it will only get worse."

It's strange because I tried to ignore my pain and symptoms and the more I do the more I faint. When I cooperate with my body the less I get into trouble. I wonder who I should listen to!

[Jacquie802]

Hi Linda,

I'm hoping that you didn't have to pay to hear that umm, what would you call it........?....Not advice!

[AJVDK]

I am so sorry you went though all that to be told to if you don't think about it will get betteR i have tried everything to get though my joint point/ muscel pain. I tried forgetting about it it only made it worse, now the only thing that is even working at all is pain meds.

Again I am so sorry you had to go though all thought you did the the pain center. I hope you will find answers soon, and start feeling better!

[MightyMouse]

You may want to consider sending a well worded letter to the director of medical services for the hospital, along with, maybe a brochure from DINET and some print outs of medical journal articles, like the one saying that dysautonomia is as disabling as heart failure.

Nina, who is shocked that the type of "care" you got still exists here in one of the more modern countries of the world.

[Sophia3]

Liinda Joy

What is even MORE DISTURBING is THIS is how the FAMOUS CLEVELAND CLINIC runs their PAIN TREATMENT PROGRAM????????????

It's downright CRUEL but if this is how they run it, they must have gotten into the New Age just THINK IT AWAY RUBBISH.

I hope to God you get a MORE COMPASSIONATE doc and the care you deserve.

I got more livid reading this thread.

Please keep us updated.

Sophia

[Patricia Gallup]

I'm a little curious how after learning this you could have stayed there for 3.5 weeks at $50 per day?!

I have read about this program and believed it to be "fake" from the get go. A neuro suggested a family friend go through this program, but had heard very bad things from other physicians (not CCF obviously) to not need to travel so far for it. I hear Mayo and Univ. of Chicago have better programs that actually WORK.

I too would contact CCF, Ombudsman or what not. I also hope you didn't pay the fee we heard they were asking! Only 10 POTS patients isn't exactly a stunning record either.

Any other patients on this forum successfully been through this program?

[MotleyLori]

Hmmmmm, I tried speaking with an ombudsman at the famous CCF a couple of years ago regarding another area of that world famous institution

I have read great things about the clinic in Chicago and I would love to be able to go there and give that a go.

Again, sorry for your experience,

Lori

[Poohbear]

This was printed in the Vanderbilt Reporter Friday 6/16/06 www.mc.vanderbilt.edu/reporter

Family History of chronic pain not just 'in their heads' by Melissa Marino

Chronic pain seems to run in the family--if one or both parents have chronic pain, the child is more likely to suffer from it as well. While this trend was previously explained by psychological factors, new research is pointing toward a biological-and perhaps genetic- basis.

To read the rest of this article go to

http://www.mc.vanderbilt.edu/reporter/index.html?ID=4825

[Sophia3]

Very interesting article, poohbear.

thanks for the link.

[Roselover]

Oh Linda- I feel very frustrated for you! I'm so sorry!

I have many of the symptoms you list. Can't really comment on whether they are all a part of Dysautonomia cause I don't know.

But I do know that I just started seeing a Physical therapist for some treatment for headaches and I am amazed at how many of my symptoms are coming from misplaced hips and ribs! So just a thought for you to consider. I'm going to paste your list of symptoms and highlight the ones that PT is helping.

--Weakness--weight loss, even though I eat every two hours

--severe low blood sugar (that's why I'm eating every two hours. I'm still skinny, even though I eat all the time!)

--low blood pressure

--joint and muscle aches--facial flushing

--shaky legs sometimes

--blurred vision all of the time! It's so bad at times, I can't read

--Other vision disturbances, such as lighting going brighter or tunnel vision

--fullness in head

--fullness in ears--right eye pain

--headache--nausea

--dizziness, sometimes feeling as though I'll pass out

--severe hunger at times

--buzzing in ears--anxiety

--low grade fever sometimes

--rib pain

--chills or feeling hot

--clumsiness

--smelly urine

--tingling, especially in my legs--just feel awful

That's a lot of symptoms PT is helping isn't it? Hope this idea helps you!

~Melanie

[LindaJoy]

Hi, everybody, again,

Thank you for your replies and support. If I told you all that happened in that pain program, I think most of you would find a way to get to Cleveland and throttle the doctor. It actually was a very hard, very horrible at times, experience. I guess, by the time I got there, I was so desperate for help, that I had to believe in something and someone, so I tried to believe in this program. Here's a run-down of some other things that happened, good and bad:

-- Was given Effexor XR and dosages upped, against my wishes and negative side effects of very high bp (155/91), painful irregular heartbeat, electric lights, constant sweating, ear infections, etc. Was told I was frustrating the $$## out of the staff because I wouldn't take the meds they wanted me to. You should see the medications they give these people!! Most went home on more meds than they came in with!

-- Was told that if I complained about my pain, I would be ignored. I pretty much was, or was given a pill for whatever. Was yelled at more than once for "doing nothing but complaining about my anxiety."

-- Was labeled an alcoholic because I drank for three months when I was nineteen, with a girlfriend of mine who was having her last hurrah before marriage and my first hurrah away from home. Was sent to AA meetings.

-- Saw people around me suffering greatly. One 79 year old lady was taken off her pain medication and forced to do all the physical stuff that all of us younger, healthier people were doing. She went home early, bless her heart.

-- Saw people humiliated in front of others for the problems they had or how they were trying to cope with life. Once a week, they have evaluations, and everyone in my group had their business, emotional and physical, put out there in front of all the other patients. No one agreed with this.

-- Witnessed my doctor tell my husband off for being "my nurse instead of my husband," and throw him out of the program! It was horrible.

-- Good stuff: Tearose, they found that my right hip bone is higher than my left, so my husband adjusts it every night, and this helps my bladder pain. I also got exercises to help with my fibromyalgia and bladder pain that actually do help. The physical therapy was great!

-- Met some awesome chronic pain patients from all over and made some wonderful friends.

-- Learned some ways to cope with stress and anxiety that are non-medicinal that actually do help, like biofeedback. Relaxation is great!

-- Learned some great communication strategies that are actually helping me to deal with my marriage and my mother!

This program was very expensive. I'll tell you, it's a lot more than $50 a day; that's just the hotel room. It's actually $2,000 a day. I hope I can say that here. If not, feel free to delete it.

I keep saying, after I feel better, I think the positives that I've learned will actually be quite beneficial! I just have to recover from the cure first!

LindaJoy

[Jacquie802]

Linda,

Did your insurance cover the bills??? I'm glad you made some new friends, but from everything else I gather this place was aweful....

[LindaJoy]

My insurance, at first, said they would cover 90% of the program. Now, they're not sure. We're still waiting to hear and trying not to worry, as that just makes me worse.

Linda

[Ernie]

Hi,

What a horror story. This is very abusive.

[Sophia3]

Not to be a BUZZKILL but if what you said is INDEED how they treat pts at this WORLD REKNOWNED CLINIC, it is worthy of a journalist investigative story.

Not to MENTION the ripoff aspect for folks traveling great distance.

Frankly, this sounds horrible beyond words to most of us.

I am glad you found something positive for such a place would've bankrupt many families.

And not just financially. This sounds like abuse to ME, as Ernie said.

What about the REAL pain people have???

I do not understandhow such treatment is allowed??? Sorry.

[Patricia Gallup]

Sadly Sophia it would be very rare that any journalist would take on a case about the world famous Cleveland Clinic because of all those they do help.

Even the Ombudsman, who claims to be there for patients, dismissed our friend's complaints about this program because naturally they are PAID by CCF, so what help would they REALLY give. Fortunately she never signed up, her first appointment was horror enough.

This is just what chronic illness patients have to deal with. By all means I suggest Linda scream to the world what this program is really all about, but few will probably listen. Of course we will!

[Sophia3]

Patricia

Yes, you are sadly correct. I wonder why I am EVEN surprised anymore about the stories we hear about "WORLD FAMOUS Docs/Hospitals".

I have heard such CoNFLICTING stories on ANS specialists all over, it;s like they must have split personalities. Helpful to some, nice but can't help others, split personalities in between visits! My one friend has gotten so she takes mom or husband in the room with her now just in case doc is major grump. He is suddenly always pleasant now. Though no doubt, overworked!! as all good ans docs are.

BUT, to treat horrible pain as this place does. Criminal

[worththewords]

Was labeled an alcoholic because I drank for three months when I was nineteen, with a girlfriend of mine who was having her last hurrah before marriage and my first hurrah away from home. Was sent to AA meetings.

That doesn't sit well with me at all. Neither did some of the other things. But what?! What is there background on determining this? Regardless, programs like AA are a CHOICE. Wow.

I'm a couple months from becoming a certified addiction counselor and unless they sent you to an appropriate professional and they discussed your drinking with you, and you decided on your own to go to AA, that's some pretty unethical practice going on there.

[MotleyLori]

Linda,

From what you posted I would concur with others regarding unethical and abusive. Some of the things you describe are clearly not appropriate behaviour from health care providers.

I do applaud you for finding a silver lining in the dark cloud, but now I am even more fearful of "signing on" to a pain managment program. I have tried 2 so far, both with dismal results. It does not bode well with me to be treated like a common criminal or like my pain is psychiatric. Never will I consider the Cleveland Clinic Pain Managment program and I thank you for alerting us to your experience.

Lori

[Guest Julia59]

Hi LindaJoy,

I'm so sorry for you-----and unfortunately I'm not surprised at the treatment you received based on my own expereince, and a couple of other experiences............

I tried to respond to you the other day----then it got erased by me somehow---so I'm sending another---

I went to Cleveland Clinic last year in October. They didn't know where to send me----based on my diagnosis/symptoms---you can see my signature line below..........

Well---I'm thinking the Cleveland Clinic----they'll know what to do---right?

First I ended up with a physical therapist/MD---she was nice/understanding---and she did confirm EDS.

Then she referred me to a neurosurgeon there for another opinion on my chiari/spine related disorders.

He agreed that I had issues with my spine, but didn't appreciate the cervical/cranial/chiari instability issues, and he didn't seem to take me very seriously. Then he said I probably have fibromyalgia & CFS in addition to my POTS.

He then hooked me up with a rheumatologist. He ordered a bone scan & cervical spine x-ray, and a thoracic MRI because of the EDS. Then he also set up a follow-up appointment with him. I ended cancelling both appointments--as I thought it may be a waste of time. However, I think I still need to get the bone scan---I'll have my PCP re-order it. I got the x-ay and MRI done.

They were read as "normal"----but it is fairly well known that instability of the cervical/cranial junction needs more evaluation then X-ray---as x-rays don't always show the existing instability. I was proved to have instability from other testing---and traction---previous to the CC visit. The thoracic MRIs from the past were read as "abnormal on several occasions" by the same hospital that did the last one that was read as "normal"---herniated disks on both C-7/T-1---and T-1/T-2---with bone spurs ect. The first PT doc at the CC thought it might be nice for me to see a PT who deals with POTS patients----in other words, if we would just move more, maybe the POTS will go away...........

VERY FRUSTRATING TO SAY THE LEAST!

In March I spoke with a gentleman looking for some help---he was also frustrated with the help/or lack thereof from then CC. He is diagnosed with POTS---but with a severe form of HYPERTENSION. He saw a famous ANS specialist----the next thing you know he's on multiple drugs to conteract the adverse reactions of the other drugs they prescribed----one of them being WELLBUTRIN----in which Dr. Grubb gave me to help RAISE MY BP. Tell me----Why would a physicain who is supposedly familiar with ANS dysfunction/hypertension---give a guy with severe hypertension a drug to RAISE BP---AND AT SIX TIMES THE DOSE that I am on!? He was finally taken off the wellbutrin----but then he was put on buspar------ Anyway---the guy is a trainwreck now.................

I'm sorry you had to deal with this Dog and Pony show---It's very sad to see one of the most "cutting edge" hospitals behind the times...........Very frustrating for you---I know---------They really sound abusive, and that someone needs to answer for this.

I wish you better luck in the future......

Julie :0)

[Guest dionna]

--weakness

--tachycardia

--low blood pressure

--joint and muscle aches

--facial flushing

--painful and shaking legs and arms mostly at night which wakes me (maybe RLS?)

--blurred vision some of the time

--other vision disturbances, such as lighting going brighter or tunnel vision

--pupils dialated or pin points at the wrong times

--dx with refractive error- hypermetropia

--fullness in head

--headaches/ migraines

--right and left eye pain

--numbness in right side of face

--tingling and numbess in all of the body at various times

--jerking and twithching all the time, esp. before sleeping

--nausea/ vomiting - and all the other stomach problems and pains

--dizziness, lightheadedness always feeling as though I'll pass out- passed out 350 or so times in 2 years.

--loss of appetite and a little weight, I feel full quickly when eating and straight to the throne I will go.

--buzzing in ears

--anxiety

--low grade fever sometimes

--chest pain/ discomfort

--chills or feeling hot

--clumsiness- feeling off balanced

--tingling, especially in my legs, hands, and feet

--chronically fatigued, sleeping atleast 12 hours a day and I add naps sometimes to that

--disoriented

--vertigo

--intolerance to heat, excercise, and standing more than 5 minutes.

--hyperreflexia

--back pain

--painful menstrual cycles and more problems and fainting at that time

--feeling "high"

--brainfog, memory loss, difficulty communicating sometimes, zoning off...

--and other stuff i can't recall of course.

so yeah... you aren't alone. most days i stay in bed or if i go out of the house... i take my wheels with me. i try to do that mind over matter thing all the time. i was in the corps. that's what we were taught. if the marine corps couldn't help me ignore the symptoms... they won't go away! i don't think that they will just disappear, or atleast not in me. i am happy for those that do get better and i am still hoping that i do but i think i have pretty much just given up the hope. i'm still vey happy with the rest of my life and i don't mind having to deal with the pains everyday. i'd say more than anything else i have just gotten use to feeling awful all the time so i don't mind. that is the only thing that helps me because the drugs definately don't. i have only actually been diagnosed with POTS but that is because i don't have doc that will listen to me and they say i can't have all the symptoms that i say i have and have sent me to mental health a few times to see if i was just mentally making myself "sick". whatever. that's the military for you.

i wish you the best of luck in finding a better response than mind over matter and ignoring the pain. i think it was crazy that he didn't want you to complain about the ear pain. what if something else had been serious wrong? it would have been the docs fault if something really bad happened. please don't listen to any more non sense advice like that. i don't want anything worse happening to you. seriously take care and forget that advice.

dionna