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.

@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 @sheilgawne! I’m Karen and I,too, have fibromyalgia. The things that have made me feel better are doing research and talking to friends who do understand. This group also helps a lot! Here is evidence that you are not alone!

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@saninmich

Hi, I'm Sandy. I have been dealing with sciatic nerve pain for five months now. I am 56 years old. I was shoveling heavy, wet snow and knew something happened when I did it. I felt something in my side. Since then, I have been to the doctor several times. I was given muscle relaxers and told to take ibuprofen. That didn't work. The pain increased and went down my legs and my knees and shins experienced sharp stabbing pain. I started physical therapy and was prescribed naproxen and neurontin. This has not helped. My feet are swollen now. So, I started seeing a chiropractor. I have only seen the chiropractor once, but felt better after the first visit. This is just all so frustrating. Just mowed the grass and finished it up with crying in pain.

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I found acupuncture to be very helpful

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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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I soooo understand. My experience is that most doctors are still clueless about fibromyalgia and its life-altering effects. I have been told it is all in my head, or it’s just menopause, or its depression. It IS depressing to be blown off by people you count on to help you, but that does not equal depression. My husband thinks I use my fibromyalgia as an excuse to not go out and do things. He won’t read or watch anything on the disease. I now try to just cherish the rare good days, pay attention to my body and be kind to myself on the bad days. I believe it is critical to identify your personal stressors that bring on fibro attacks (getting too tired or too stressed) and guard against them the best you can. Taking 800mg of magnesium plus 2400 mg of malic acid (apple pectin) daily has made a significant improvement in my fibromyalgia symptoms.

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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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@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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@katie215

Hi Sheila. Welcome! This is a very warm and helpful group. I am shocked, however, you were refused treatment at Mayo. Their reputation is stellar around the world. On another note, chronic pain is no picnic and learning to put yourself first is hard to do. Recently, I read a gem and have been trying to practice it. I'm not letting this pain define me. I'm Learning that we teach others how to treat us by not roosting on their comments, actions and/or attitudes. As well you will find many suggestions here and you just might find one or two that work for you. Best to you.

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@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 Well this is shocking actually. @saninmich Are you familiar with this type of situation?

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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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@saninmich

Hi, I'm Sandy. I have been dealing with sciatic nerve pain for five months now. I am 56 years old. I was shoveling heavy, wet snow and knew something happened when I did it. I felt something in my side. Since then, I have been to the doctor several times. I was given muscle relaxers and told to take ibuprofen. That didn't work. The pain increased and went down my legs and my knees and shins experienced sharp stabbing pain. I started physical therapy and was prescribed naproxen and neurontin. This has not helped. My feet are swollen now. So, I started seeing a chiropractor. I have only seen the chiropractor once, but felt better after the first visit. This is just all so frustrating. Just mowed the grass and finished it up with crying in pain.

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Sanimich you may have to go to chiropractor for more then one treatment if it helped

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@katie215 Don't let it get you down. This is not the worst I have seen in the Medical Community. How about faked reports for non-existent lab work? Or letting a urine sample sit on the lab turntable two days for checking to see what it is? Or getting 6 liters of urine for 24hr protein assessment, but measuring and reporting only 3. Or spending $10,000 to be tested for Amyloidosis, and never having anyone check liver, kidney, brain, heart, lungs, mouth, feet, eyes. This is why every person must learn to be their own advocate.

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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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