Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Sheliagawne Ive had fibromyalgia since the 90,s they didn't then and still don't believe we have fibromyalgia nor do they know what causes it or cure but for me medicine he snt the answer I take extra magnesium ,msm,malic acid in a product called Fibro Malic listen to your body rest ,say no when tired You,ve got the right idea .

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@oldkarl

@katie215 A suggestion. Don't be shocked at a patient being turned away by Mayo. I have been turned away by Mayo, and several others. Generally, if the doc does not know what to do, any doc will say the patient is "psychophysiodystrophic" and turn the patient away. And in spite of being legally a non-profit, the folks involved make a good profit. So it is to their own best interest to turn patients away when they feel they do not know what to do otherwise.

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@oldkarl
I've tried to get an appointment, for my back, 3 or 4 times in Florida.
I've been turned away each time.
Apparently, the accept only a certain number of patients with certain ailments.
So, I'm not surprised.

Feel good!
Ronnie (GINSBERGr)

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@capausz

I was cast out of Mayo in Phoenix when I had my 65th birthday. My Mayo PCP said they could not make any money with Medicare patients. I felt very betrayed after being a patient there for several years. And, because my primary was no longer at Mayo, I could not get in to see specialists because I needed a referral. It is what it is. Very disappointing.

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@capausz
I am really not surprised that Mayo does not take Medicare.
Many doctors no longer take Medicare or they charge you the fee and they refund after they get paid.
I remember my mother-in-law having to change docs several times.
I don't think your PCP verbalized correctly.
I don't think they want to 'make' money off of Medicare, I think they just want to get paid.
Many docs say that either Medicare is very slow to pay, if they pay at all.
Regardless, I am sorry you have to find another doctor.
Good luck!
Ronnie (GRANDMAr)

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@gingerw

@sheilagawne Hi Sheila, this is Ginger, and like the others, fibro is one of my diagnoses. It's real, don't let anyone tell you otherwise. Please look after yourself best you can, be gentle on yourself, turn away from the naysayers, and tune in here. There are a lot of us "fibro warriors" here. In fact I just named my car to relate to being a warrior!
Ginger

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@gingerw
Hi!
I'm another Fibro Warrior.
I was diagnosed over 20 years ago by a physiatrist (NOT psychiatrist).
Since then, I was diagnosed by several other docs.
One doc who got me very angry was a chiropractor.
He broke down the meaning of the word to explain the syndrome away.
I also remember watching one of the hospital/medical shows on TV.
A lady who was in a horrible flair up that she needed to go to the hospital.
Even the docs in the hospital didn't believe her and they released her.
She was back at the hospital.
After lots of research and testing, the docs changed their attitude.
You know what is said......if you can't see it, test it or feel it, it doesn't exist...........NOT!!

You are not crazy, you are not making up the pain, yes, your pain may be more bothersome on different days places.
Hold your head up, none of this is in your head.

Best of luck!
Ronnie (GRANDMAr)

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@sheilagawne

Hi everyone. My name is Sheila and I have been diagnosed with fibromyalgia. I have joint pain and stiffness, mood swings, periods where I can't concentrate or think straight feel like I am in a fog. I keep thinking there must be something "real" wrong with me. Please don't be offended, I know this pain is real, and it has pretty much ruined my life,. My problem is that it seems like no one else thinks it is real. My doctors treat me like a drug seeker or malingerer, I am in constant pain. Sometimes it is worse but I always have pain. Anyone have any advice? I tried to be seen at Mayo but they turned me down said I could get care in my community. So ten years later still in pain it has just progressed and I still have no hope.

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Hi @sheilagawne,

Before anything else, I want to assure you that although fibromyalgia may not be easy to diagnose, it is a very real condition – it's a chronic pain syndrome that experts believe is caused by a malfunctioning nervous system.

I’m sorry to hear that you had difficulties receiving an appointment at Mayo Clinic. Unfortunately, because Mayo Clinic has more requests for appointments than available openings, other factors do come into play. And, the complexity of the medical condition and, for less complex conditions, the availability of care closer to home are also factors.

I sincerely encourage you to view this Mayo Clinic article about "Fibromyalgia misconceptions: Interview with a Mayo Clinic expert" https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia/art-20048097

@sheilagawne, aside from medication have you considered trying complimentary therapies like acupuncture? Have any family members been diagnosed with fibromyalgia in the past?

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Hi. I am JoAnne who just joined the group. I am 64 and have fibromyalgia and have just been diagnosed with pelvic congestion syndrome. Looking forward to discussion.

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@mark13michael

Hi. I am JoAnne who just joined the group. I am 64 and have fibromyalgia and have just been diagnosed with pelvic congestion syndrome. Looking forward to discussion.

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Welcome @mark13michael.

You might also be interested in viewing this Mayo Clinic Video Q&A on Connect, https://connect.mayoclinic.org/webinar/video-qa-about-pelvic-congestion-syndrome/ where you can learn more about

– Pelvic congestion syndrome — why it is so underdiagnosed and misdiagnosed
– How pelvic congestion syndrome causes chronic pelvic pain and the symptoms
– The role an interventional radiologist plays in the treatment of pelvic congestion syndrome

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@kanaazpereira

Welcome @mark13michael.

You might also be interested in viewing this Mayo Clinic Video Q&A on Connect, https://connect.mayoclinic.org/webinar/video-qa-about-pelvic-congestion-syndrome/ where you can learn more about

– Pelvic congestion syndrome — why it is so underdiagnosed and misdiagnosed
– How pelvic congestion syndrome causes chronic pelvic pain and the symptoms
– The role an interventional radiologist plays in the treatment of pelvic congestion syndrome

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Yes thank you I did. Now I just need to get treated.

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