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FRUSTRATION
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Fibroreality posted:
Hello. I wanted to know if anyone else is feeling the way I am. I am in constant pain all over my body. My feet, ankles, heels, hands, wrists and arms have begun to hurt so bad I find myself crying. My left leg has gone numb at night as well as my right hand. I have seen several ortho doctors, a podiatrist, and a neurologist who conducted a nerve conduction test and said my nerves were fine. I am tired of one doctor saying one thing and then another saying something different. This feeling of not knowing and being in constant pain from the fibromyalgia and arthritis is causing major depression. Filing for disability is a joke too. I am at my wits end and do not know where to go from here. To make it worse, medicaid is cutting me off due to the lousy $570.00 I get in child support and my age (whatever that means). I have no other income coming in. I have been going on job interviews knowing that I am in excruciating pain and will only have issues if I am hired. At the end of this month I will not have any medical insurance and would not be able to see my rheumatologist. I just feel like giving up and I don't want to.

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WHAT DO WE DO WHEN WE LOSE OUR MEDICAL BENEFITS, CAN'T WORK, AM IN CONSTANT, CHRONIC PAIN, AND NOBODY SEEMS TO KNOW THE ANSWER AFTER GOING TO MULTIPLE DOCTORS? IS IT ALL RELATED TO FIBROMYALGIA OR IS SOMETHING ELSE GOING ON THAT NOBODY HAS TESTED FOR?
  • SEE A SPECIALIST
  • DISCOUNTED HEALTH INSURANCE
  • MUTLIPLE SCLEROSIS
  • ARTHRITIS
  • MEDICAL BENEFITS
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michmorn responded:
I'm so sorry for all you are going through. I am in Canada where my medical and prescriptions are covered since I live in poverty. However, we pay the price by waiting a year or more to see a specialist, scans..or anything else we may need. I was approved for disability but I can barely live on that. I'm not sure exactly how things work where you are. I have learned that a good Rheumatologist is priceless. After ruling out all other things, mine did the tests for fibro in her office and finally I had my answer. I've seen so many specialists, none of them knew what was wrong. Most dismissed me. Maybe while you still have insurance, find the best one in your area. Research them all. Also remember they work for us...not the other way around. If you encounter a bad doc...I would fire them. I've had to do that many times. Some have been so condescending and rude I've just walked out. Some think fibromyalgia doesn't exist..or you're crazy. You are NOT crazy...it IS a real disorder. I had an internal medicine specialist say.."nothing is wrong with you"....I said "what about Fibromyalgia?"....he said..."all that means is pain..and there is nothing I can do about that. You have nothing I can help you with"...I went home and cried. I wasted so much time and energy going to the wrong doctors. Everything will be okay. You're at the right place for support..and keep pressing for the right doc. You deserve that. Best wishes to you.
 
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Caprice_WebMD_Staff responded:
I'm sure you're not alone in feeling very frustrated with it all. (((softhugs)))

I just wanted to respond to bump this back up because I think you also want responses, not just poll voting.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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michmorn replied to Caprice_WebMD_Staff's response:
Caprice:

Just a tad off topic...but I noticed you are close to my location. I'm on Vancouver Island in Canada. It's wonderful to 'meet' you....and thanks for all you do to help others.

Fibroreality: Caprice is right. You are not alone. Please don't give up.

Michelle
 
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1wareaglefan responded:
I'm so sorry you're having to go through all of this! Is your rheumatologist giving you anything for your pain? Maybe ask him what you're options are if you're about to lose your insurance.

I just wanted to let you know I have pain in my feet, ankles, legs, back, well pretty much everywhere, but those places are the worst. I also wanted to tell you that you've come to the right place for encouragement and support. I'm sure others will be along in a bit with more advice.

Meantime, hold on and don't give up. There's got to be an answer for you.

Gentle hugs, Elizabeth
 
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booch007 responded:
Good morning,

I would..take a deep breath first, try and get empowered to fight for yourself,try not to fiold in....you get no where then.

Get to a rheumatologist who sees alot* of FM. When you call for the appointment just ask, many FM patients? Do this before insurance runs out.

Then maybe call the social security office and ask to forward you to the medicare/medicaid section. Talk to them for help with an appointment for food stamps and help. Use a food pantry at a local church and talk to them. Look into (we have P A R C) Putnam area resource center....this is for women who have had varying issues and are trying to make it alone....abuse, disease, challenged...it offeres counseling and help. ( so look for women resource centers...)

We had a girl Momo here who left to a womens shelter to get into the system and see a counselor and get on the right track..it worked and we have NOT HEARD from her since!

You need to educate yourself for what is out there. Your state will have programs for the needy in health insurance. Law is coming into effect and maybe is there already to have it available for you.

NO INCOME gives you a door open, you just need to find the doors. Deep breath. I wish I had all the social worker information and law in my head to help. THEY are so good at what they do and what they know in the system to help people.

So there are some ideas..............Please keep trying the non medical tools to help abit to relieve some of the pain. The toolbox is to the right in resources. Motrin 600mg was my best friend for a long time, just couldn't take as much of it as I did. You get bleeding issues and I was changed to tramadol then. But it is a start.

Good luck, get out the phone book and look under agencies and make a plan for Monday Morning................Nancy B
 
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rudyandirmouse responded:
fibroreality, I am so sorry that your having to deal with the pain and fibro issues as well as having medicaid withdrawing your medical benefits. Believe it or not many of us here have had similar things happen to us and can so understand how you are feeling.

You didn't say which state you live in so I can only suggest appealing the decision about your benefits being stopped/ cut off and if that doesn't work out. And hopefully there are other avenues/ places/ organizations there where you can apply for help with medical or medication coverage.

I used to live in the San Fernando Valley and many times, years ago, the only health provider I had was the Free Clinic and thank God for them. Helped me many times when I needed it most. I hope that you have something there that will be of support to you now like that was for me.

I will keep you in my thoughts, please re post as we care here and want to be as supportive as we can.
Gentle hugs, Linda R
 
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rudyandirmouse replied to michmorn's response:
michmom, OMG is it that bad there in Canada?? You have National Health Coverage there and it's that bad? I can't believe the time one has to wait there to see a doctor,, specialist, get testing, operations. That's so wrong!

Sorry that you have been treated so shabbily there while trying to get DX'd. I went trough that many years ago when no one believed Fibromyalgia was even a medical condition(s). It took 2 years before they ruled Fibro in and all other things out, which looking back to those Dark Ages/ Medieval
medical doctors, taking 2 years was the norm. And when I got the fibro DX all I was given was a muscle relaxer and sent to a head doctor for a year and a half of 1/2 hour session on How To Make Linda Not Make Herself Fell Sick. UGH!!!

But seems to me my 2 year journey has been nothing compared to what you've had to endure. Sorry that you have had to deal with such rude and uncaring people along the way to the Fibro DX.

Okay, just wanted to pipe in on this..
Gentle Hugs, going your way, Linda R.
 
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Fibroreality replied to booch007's response:
Booch007:

Good afternoon and thanks for replying. I have tried all the options available for me in the state of Georgia (which is not employee or consumer friendly). I went to my local health department and was told that they do not employ any doctors and do not have the means to treat me for my medical issues. They only do things like, STD, Sickle Cell, Well Child, etc... I have an appointment for new rheumatologist on July 9th at Emory University. However, my benefits end on 6/30/12 so I will not be able to keep that appointment. I have a list of resources, however, many charge a sliding scale fee and I cannot even afford that at this point. Their office visits are $50 and up, even if you have little or no income. The hospital where everyone goes who is uninsured, has now only begun to accept clinic patients who live in that county, so that leaves me out again. I recently went and filled all my prescriptions before my insurance ran out and I am going to see my pcp on Monday. The thing about the doctors here is that I can call them a week before and they are booked up! When I explain to them my dilemma they make no concessions to get me in early. I even ask them to place me on the call list when somebody cancels; no luck. I am a licensed counselor and all the resources that I have given past clients I have utilized with no luck. I am going to keep praying and asking God that he open doors for me that I have been unable to. Thanks again.
 
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Fibroreality replied to rudyandirmouse's response:
Thanks rudyandirmouse. I have tried the free clinics and they have no doctors on staff to help me. I live in Georgia and the free clinics that are available are limited in what they can and do treat. The one near my home had a free arthritis clinic, but when I went there last week they said that they no longer offer that service and that they dont even employ doctors. I was shocked. Anyway, thanks for the encouragement and I am going to keep advocating for myself.
 
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Fibroreality replied to 1wareaglefan's response:
Thanks for the encouragement and words of support. I am experiencing more pain now than ever before. I took a fall back in August of 2011 and sprained my ankle and my neck. Ever since then the pain in the feet has been excruciating. The podiatrist said that the fall triggered the fibromyalgia and referred me back to a rheumatologist. However, with no insurance I cannot go back to my rheumatologist. Georgia is not a friendly state for employees, the poor, or consumers. I am afraid that the laws here are stacked against people like me and the agencies that used to provide assistance are experiencing so many budget cuts that they some are only helping children and pregnant women. I wont give up but I am feeling very anxious about what is going to happen to my health with no insurance coverage.
 
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Fibroreality replied to michmorn's response:
michmom:

Thanks for responding and giving encouragement. I reside in Georgia and they are not friendly to their poor, homeless, employees, or consumers. I have found a rheumatologist but they were booked up for months when I called them back in April. The earliest appointment they had is on July 9th, but by then I will not have insurance. You explain to them your situation and they wont even try to work you in earlier. I fired one doctor and even reported him to the medical board for his discriminatory remarks about me having medicaid and not wanting to write me a prescription because he "did not want anyone to have to pay for it" and told me to buy something over the counter. Thanks for the words of support and encouragement. I truly appreciated reading them.
 
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michmorn replied to rudyandirmouse's response:
Hi Linda,

Yes, the wait times are really that bad in Canada. It's disgusting!

I'm sorry to hear of all you have been through as well.

Sending hugs back! Thanks for reaching out to me.

michelle
 
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michmorn replied to Fibroreality's response:
Fibroreality,

My pleasure. I'm so glad the resonses here give you some comfort. I wish I could help everyone here..and take away the pain. Good for you for being strong enough to stand up to bad doctors! Why some of them are allowed to be in practice is beyond me.

I wish you sooo much luck and will be thinking of you.

Hugs.

Michelle
 
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xperky replied to Fibroreality's response:
Hi Fibroreality - When you see your pcp, ask for as many months on your prescriptions as allowed, after explaining your situation. Hopefully after a couple months you'll be able to get the ball rolling in your direction. I know, FM along with arthritis can be very painful and tiring.

I wish our society/people cared about those who "fall through the cracks."

It seems our doctors are overwhelmed with patients on waiting lists, and yet some can barely afford the costs of malpractice insurance. The system needs a lot more fixing.
With Compassion,
Margaret


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