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Rheumatologist says " Nothing Else She Can Do For Me"!

Apr 24, 2016 10:08 PM

First I want to say... this is not about my Doctor! She is wonderful and patient, having tried treatment after treatment in an attempt to help me. She even sent in a referral request to Mayo Clinic to see if they could help me and unfortunately they declined my request for treatment. I have officially been diagnosed with fibromyalgia. Although I am willing to accept that I may have fibromyalgia I am not willing to accept it is the only thing wrong. First of all they say that fibromyalgia has flare-ups periods of good and bad times when you may not experience much pain if any at all. I have not had a single solitary day without some level of pain in almost 7 years. My question is this... Have any of you ever gone to the Mayo Clinic and do you think if I just showed up in the ER that they would treat me? It's a little bit of a trip as I am in Illinois and Mayo is in Minnesota. Although I'm not unwilling to take a chance I will be even more frustrated and highly disappointed if they plain and simply turn me away without so much as an intake. I'm so tired and I don't know how much longer I can cope with constantly being in pain. The cramping & burning pain is just too much to tolerate. Something's Gotta Give!!!

Apr 24, 2016 10:56 PM

I too have fibromyalgia and I have pain every single day. Some days are worse than others. I call my glare days my intolerable pain. I will admit that my flare days are much worse when I am stressed. Too cold or too hot. My bad days I cannot stand to be touched. The only thing that helps me is pain management. I am still in pain all the time but it is more manageable. Fibromyalgia has more than 60 symptoms so you will have something going on pretty much everyday.

Apr 24, 2016 11:35 PM

If you have Fibro youre going to be in pain everyday its just a matter of managing it with certain excsezises, try a yoga called DimondDallasPage (DDP) yoga it really works, medications, and doctors, such as pain management, even certain foods can cause a flair up, I have Fibro but I also have other issues like dislocating joints, nurological (brain) issues such as epilipsy etc.etc.

Apr 25, 2016 4:34 AM

There is an alternative. You live in Illinois and are closer to Cleveland Ohio. The Cleveland Clinic is in the top 5 hospitals in the country. Why don't you contact them? They are wonderful. Why don't you check up on their qualifications?

Apr 25, 2016 5:20 PM

Roxfairy77, I've been dealing with fibro since 2007-2008, along with many other chronic pain issues like OA, DDD, Sjogrens, and many others. I have fibro pain daily, muscular & soft tissue pain, on an avg 3-4 level. When it flares much higher. The sjogrens, besides causing extreme dryness of eyes, nose, mouth, skin etc, randomly flares & causes joint pain in the hands, fingers, knees. I'm finishing up PT for my OA hip and by keeping myself mobile as possible it's helped lessen the fibro tender spots in the sciatic joint areas. Gentle stretches are helpful too. After the sjogrens diagnosis i was put on Plaquenil, which is why my pain went from the daily avg 7-8 level to the 3-4 level. It was a blessing, the Plaquenil. I also take gabapentin for the neuropathies. It is very possible you have more than fibro going on. Many of us have multiple dx that cause pain, and most of us with one autoimmune issue end up with more.

As for Mayo, you can self refer but it's typically better to go through a doctor referral. They refused to see my cousin, who has fibro but already has a pacemaker, diabetes and other issues. I was sent there (FL) to treat for memory loss and tremors, along with other suspect symptoms. Other than diagnosing the cause for my dizziness, they didn't find any dx that my other local docs didn't know already. But because of the fibro they wanted to put me into their expensive ($30K) pain rehab clinic. Having already traveled three trips, at over $5,000 cost I could not do it. Mayo's pain clinic originated in MN, so if they're willing to take you it's likely they'd want you in their program. If you can go to the Cleveland Clinic it might work out better for you, cost wise. Hugs & prayers you can find a doctor who will have ways to help you cope! 🙂💕🙏🌼

Apr 26, 2016 7:44 AM

I did not accept everything was fibromyalgia. Infact after being diagnosed chronic fatigue and pain for years when first told me I had fibromyalgia I told the doctor "no really figure out what is wrong with me". I had 2 pain clinics say nothing more they can do. I started focusing on the worst pain which was my low back then went to the next worse pain. I have multiple spine issues that would not have been found because they put all my pain under fibromyalgia obviously easier for them to have a blanket statement.

You know your body best not them. If you think something more is wrong don't stop pushing. If i could go back and change one thing it would have been to not accept the bs doctors told me and to force them to actually work. It took me years and moving out of a bad medical system that controlled the area I was in to finally find out what is going on. It doesn't change where I am with pain, doesn't change that something can be done. What it does change is knowing my limitations and how to take care of myself to hopefully slow some of it down. Good luck in your search for answers.

Apr 26, 2016 8:01 AM

Wow! Having similar problems with the doctors where I live! I am having a hard time continuing to go when nothing they do seems to give me relief and I'm tired of leaving the appts in more pain and more confused. As we all know the pain becomes even more intense when we're stressed and tense on top of the poking and prodding by the docs. I have several things wrong with my back/body as I've said in other posts.....one of my docs said he thought my life conditions were causing me to have fibro. I just want relief and answers! Good luck!

Apr 26, 2016 8:58 AM

Roxfairy77 they said I have FBS but wen they ran blood work and found several Vitamins and mineral severally low Vitamin D2&3 were prescribe my pain eased up. The pain flares up I go get the blood work done and they increased my D2&3. Hope you find the answer and it be a simple one. Feel better soon!

Apr 26, 2016 7:07 PM

Roxyfairy...as a physician actively involved in office and hospital care, I am fairly certain the ER would turn you away (hospital and insurance policies). Fibro requires a long term strategy with your primary care physician or rheumatologist, often in conjunction with physical therapist and even pain doctors. If you feel like you have come to a dead end with your current doctor, it's ok to ask her for a second opinion locally. Often times, you need someone with a fresh perspective who has developed experience treating fibro patients to make some progress.

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