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chroniccrocheter

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Joined
Jun 1, 2013
Messages
6
Diagnosis
09/1995
Country
USA
State
Georgia
Since I got my disability last year I have had issues keeping docs. Either they don't take Medicaid or they take Medicaid and see my list of medical issues and say sorry can't treat you due to your case being complex. I have been diagnosed with RSD/CRPS since I was 15 so 18 years now and added Fibro a year after the RSD/CRPS diagnosis. It has been a long road and most of it without meds. I only got started on meds consistently 5 years ago. I really didn't want to get on meds but it was getting to the point that I could handle the pain. I have learned through lots of trying and failing that pain meds don't work they increase pain instead. I was on Lyrica for 6 years but it stopped working and I'm now on Neurontin. I will be going back to my old doctor from the Fibro & Fatigue Center since I know she listens and I have had success with her protocol. I wanted to start documenting my journey this time around since I have memory issues so I started a blog.

I also started a petition to change how doctors do things so they slow down and take time with patients and make sure they get the care they need and that link is on the blog. I look forward to getting to know everyone.
 
Joined
May 27, 2013
Messages
20
Diagnosis
05/2013
Country
US
State
Pennsylvania
I don't know what RSD or CRPS is, but Fibro sucks. Either way, welcome. Sorry to hear about bad luck with doctors. Some just don't know how to help, others are morons.... too many morons practicing! Ugh. Great idea on the petition. Hello and welcome :)
 

Yvette1205

New member
Joined
Mar 11, 2013
Messages
3
Diagnosis
03/2013
Country
US
State
New Mexico
I seem to find every moron doctor there is.. took me over 8 years to get diagnosed.. And yep, fibro does suck...

Welcome!
 

Amalia

Active member
Joined
Jun 20, 2013
Messages
49
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Country
ro
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romania
Hi! I admire the fact that you want to make a difference by starting a petition. I hope things will get better soon for you, I'll be praying.
 

chroniccrocheter

New member
Joined
Jun 1, 2013
Messages
6
Diagnosis
09/1995
Country
USA
State
Georgia
Thank you. The most effective thing I have found is taking my service dog with me. It stops them and makes them slow down.
 

Beth

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Joined
Jun 19, 2013
Messages
2
Diagnosis
06/2001
Country
USA
State
FL
I know what you mean about doc's that don't care. I was just called "wackey" by a doctor this week, and he refused to help me. All he did was write a script for Klonopin for anxiety to calm me down. What an ass. He obviously thinks Fibromyalgia isn't real. I was so insulted.
'
 

chroniccrocheter

New member
Joined
Jun 1, 2013
Messages
6
Diagnosis
09/1995
Country
USA
State
Georgia
On the 16th I go back to the Holtorf Medical Center. I went there in 2007 & 2008 when it was the Fibro & Fatigue Center. That is the last time I was pain free without narcotics. I'm looking forward to it.
 

sherri415

New member
Joined
Jun 27, 2013
Messages
1
Diagnosis
01/2000
Country
USA
State
Ohio
I know all to well about the quacks out there, over the last many years of this "wonderful" journey and living from Oh to GA and back to Oh then moving to another city in Ih I have had to change and try doctors. In GA I had a wonderful Pain Mgt dr who diagnosed me, advised and treated me then moving to Oh was another ordeal. First doc said I was to far gone for any help? Second doc did a block n me that about killed me third doc had me on morphine, 6 moths of loss of memory family had her reduce the dose I came into reality had gone thru 10,000 dollars and lived in a diff house and went cold turkey without help from the doc. She refused to help me and wound up in the hospital w panriacitis and almost died. found a family doc he put me on Vicodin and I take it ONLY when I need it. I have built up a huge pain tolerance. I moved went to another dr than my now family doc recommended he told me to see a psychiatrist WHAT LOL LOL, my reply I ALREADY DO! I know have an appoint with a RA doc upcoming. I sat down with my now family doc and had a very long discussion she does not deal with FB/CFS. Together we found the top rated RA in the Dayton area and she checked him out from her sources. A medicine that does help that I take at night is called TOPAMAX. I have taken several meds over the years and trust me this one is a keeper. no side affects but drowsiness and lack of appetite. I highly recommend it! RESEARCH RESEARCH RESEARCH my friends!
 

chroniccrocheter

New member
Joined
Jun 1, 2013
Messages
6
Diagnosis
09/1995
Country
USA
State
Georgia
Just today we had to cancel all the testing they had set up because the hospital refuses to allow my service dog (which I understand) and they refuse to allow my husband to stay with me. I have been physically restrained by medical professionals because I told them that I only wanted the IV they were doing in the back of my hand and they decided not to listen to me so they held me down and put it in my wrist. Since then I have made it clear that if my husband isn't present to advocate for me then I'm not having it done. We have already had several issues with just getting them to take blood from my port.
 

pinkypoo38

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Jul 2, 2013
Messages
17
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00/0000
Country
US
State
ms
I'll sign that petition because in the last 4 years alone I have been giving every pain pill it is, alng with different reason for the problem. I went to 2 doctors who where with the crap telling me nothing wrong but I need to take ibprofen. Well I know I am not nuts but the pain,tiredness and other issues are about to drive me nuts. oh yeah and I forget stuff like I need to be in a nursing home
 

Amalia

Active member
Joined
Jun 20, 2013
Messages
49
Diagnosis
00/0000
Country
ro
State
romania
I know what you mean about doc's that don't care. I was just called "wackey" by a doctor this week, and he refused to help me. All he did was write a script for Klonopin for anxiety to calm me down. What an ass. He obviously thinks Fibromyalgia isn't real. I was so insulted.
'

What kind of doctor calls a patient 'a wackey' ? Isn't this an ethics problems? Couldn't you file a complaint? Dear God, what are we for them? Animals?
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
First off Yvette1205, I met a few moron doctors in Florida, that you might have missed. LOL

But there are a great many doctors out there that think they are something special, not in a good way, and being called "wackey" or a "basket case" or that you just have "anxiety" or "your depressed" is quite common. I think it is because they don't know, and that they just can not admit it. So it is somehow all our fault that we are sick.

Some medications are not as harmful to our bodies like the addictive ones, so if you are offered one that is not bad like neurontin, give it a try. Neurontin must be taken on a regular basis everyday to work well. You can't just take it whenever you feel like it. I have used it for about 15 years or more and it interacts with other drugs better than most.

Dealing with doctors is hard because they think differently. Take your worse symtoms to them first and then move on to others after first worse ones are under control. Lots of doctors give patients with medicaid or medicare, 15 minutes to tell them everything. Even if you supply some with your whole medical history records, some still want you to tell them the details in person. That can be really fun on brain fog days, when just remembering who you are or when you were born becomes a problem.

Just be brave and do the best you can. Ask others what doctor's they did well with and if you get one you don't like, well your paying him right?
So move on and find a better one. :)
 

kmpisces

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Joined
Jun 20, 2013
Messages
151
Diagnosis
00/0000
Country
Uni
State
PA
I just wanted to say that I am sorry you have to go through all this. I hate when you cannot get the care you need based either on insurance or doctors not seeming to know how to handle complex cases. It is so frustrating and so unfair that people have to suffer.
 

Amalia

Active member
Joined
Jun 20, 2013
Messages
49
Diagnosis
00/0000
Country
ro
State
romania
I agree, it's very frustrating and actually it makes me very angry to hear about this cases. We should respect each other as people first, moreover in a doctor-patient relationship, when we go to them to seek help, not to get insulted.
 
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