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Fibromyalgia
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Posted 7/9/2014 12:12 PM (GMT 0)
Hey everyone, its been awhile since I posted last but im still struggling to find help. I still haven't found a new primary care doctor that will take me and my rheumatologist isn't any help.

I'm currently off all medications and have been for well over a week or two. No withdrawals from anything which is good but the pain is still there and so are my problems with falling asleep. I was up past midnight last night and had to turn around and wake up at 3:45 am for work. I'm struggling pretty bad today and my whole body hurts.

I just want a doctor that understands and isn't afraid to treat a young male for pain. I'm about to give up on everything.. I'm tired of feeling like this and not sure how much longer I can take it. The fatigue and constant aches and pains are killing me.
Posted 7/9/2014 1:11 PM (GMT 0)
It is hard to find a doctor who will understand and be helpful. Most of us have been through this or something similar.

You do have to shop around and visit doctors, and that way you will find a doctor who is fibro-literate. It's unfortunate that it ought to be this way, but it is hard and you do have to do your legwork.

Is there a teaching hospital nearby? Many have great luck with these. Call the rheumatology department at your local hospital and ask for recommendations.

What I will tell you is that most doctors are not going to be empathetic. They are professionals who deal with medical knowledge. They just are not trained to be patient-friendly. Furthermore, they have their own likes and dislikes which can sometimes color the interaction.

Also, many PCPs will be less than thrilled to deal with a patient that doesn't get better, or is difficult to diagnose. These are generalists, and will send folks they are uncertain about to specialists. It makes sense, but is still hard for the patient.

I have had one terrible rheumie and one terrible PCP. They were both when I was living in a very poor area, that was just far enough away from the state capitol's medical centers. Sometimes, the size and make-up of the town makes no difference--sometimes it really does. Also, the area was well-known for a good bit of drug usage, illegal and prescription. -sigh- I am glad I moved.

I hope you find someone to help you. A good doctor doesn't grow on trees. Search wisely!
Posted 7/9/2014 1:14 PM (GMT 0)
I have spent several hours researching and calling all the doctors around town with little luck. My insurance won't let me see any specialists without a referral each time. Now I'm not sure how I can even see my rheumatologist without getting a referral from a PCP.
Posted 7/9/2014 1:40 PM (GMT 0)
How about finding a really good PC and see them. If they are really good, if they can't help you they will refer you to a specialist that they know is good. They want to keep their good reputation.

Still, do your homework when choosing a good PC. Internists have more education than the general practitioners and most medical plans let you see an Internist for your PC. They are usually listed in a different part of the insurance catalog. When I was on an insurance program, the doctors were listed alphabetically according to their speciality. So go check that out. You DO want a board certified doctor. That's important.

As far as your pain and sleeping issues, go back and reread what the members all suggested to you...including me. At the top of this page you will see My Profile. Go I to that and it will show your last ten posts so this is the easiest way to reread things. Also read other posts. You will learn a lot from the posts.

I hope this helps you.

Sherrine
Posted 7/9/2014 1:48 PM (GMT 0)
Have you tried contacting a local fibromyalgia support group? Sometimes hospitals have these support groups, so maybe you could phone your local hospital and ask. Someone in such a group may know of good, helpful doctors who are willing to help with fibro symptoms.

I know my own family physician is good and tries to be helpful and supportive, though it's not his specialty at all.
Posted 7/9/2014 1:59 PM (GMT 0)
I'll go back and reread my other posts and go through the suggestions again.. My memory is shot so I forgot I even mentioned my sleeping problems in prior posts.

As far as support groups, I tried looking for those and was able to find 1 in town.. I was hoping to get a PCP referral from one of them, but I still can't get ahold of the group. I also remember it was a local woman's hospitals support group and I'm a male lol.
Posted 7/9/2014 2:19 PM (GMT 0)
I really don't think you will find a male support group since fibro seems to hit women far more than men. Also, men could have this illness but don't seek help for it. You are one of the smart men that do!

Sherrine
Posted 7/9/2014 3:57 PM (GMT 0)
Well if I didn't have good insurance then I probably wouldn't be going to the doctors for it. I pay a lot of money for this insurance so I figured I should use it..lol Plus being 25 and always tired and hurting isn't normal :-(
Posted 7/9/2014 4:33 PM (GMT 0)
Maybe the women will let you be a part of support group.. They are use to it being only women..

Don't give up
Posted 7/9/2014 5:12 PM (GMT 0)
It is hard. The pain and fatigue and brainfog hit us, and just following through on things is complicated. It can get better, but you need treatment and knowledge.

But, this is important and you need to do it. No one else can cover this ground but you. This can be overwhelming and hard.

The women's group may have location-specific suggestions for a doctor. I hope you feel better soon.
Posted 7/9/2014 9:03 PM (GMT 0)
Hi nooneknows,
I'm a male, I know. Believe me I know. You have to take charge of this condition or it WILL take charge of you. KEEP LOOKING FOR A DR. WHOM BELIEVES YOU. If you have to drive to find one then so be it. I've read your previous post about your job which sounds labor intense and I know that has to be rough too.

I can't remember do you have a spouse, partner anyone whom you can talk to when you need to? A friend a parent anyone? sometimes just verbally venting helps. someone you trust someone who you can just pour it all out to who will understand and not judge you?

we are here for you to talk to to bounce ideas off of. but it's you that's going to have to put in the hard work and it is hard work. you're going to have to find out what medication works for you, what type of stretching or exercises or vitamins or supplements help you feel better help you take the edge off.

It's going to have to be you that digs deep and has a positive attitude inspite of how you're feeling. I have had this for 14 yrs. I have pain EVERYDAY , everywhere. I understand what you're dealing with. We all do. I work 50hrs a week but most importantly. I HAVE A GOOD LIFE INSPITE OF THIS RIDICULOUS CONDITION.

I go to concerts, amusement parks, water parks etc. Etc.
I do not let this stop me from doing. Keep in mind tho I only have fibro and some osteo arthritis.

when I hear you say you feel like giving up... to that I say No No No!!! It gets better man, it really really does. Fibro has periods of days , weeks, months or longer where it's crappy bad extremely terrible. That's where you have to stop an take charge and find out what helps you take the edge off. believe me when I tell you it gets better it really really does you just have to keep believing and keep searching and moving forward, but. ... you will get there!
The things in life that are hard are so much more rewarding in the end. Final words. Stay strong and stay the course.
Posted 7/16/2014 7:59 AM (GMT 0)
We are all humans, male or female. Fibro is more normal for women to have but if you have it and are in pain then I would most certainly want to help support you in any way I can.

Don't know if a man with fibro symptoms are much different,haven't checked into it. Like I said though if you are in constant pain and fatigue then you need guidance too. I know I've learned so much here, and when I'm really hurting like tonight, it helps me to get support just from reading others post. I see how they are struggling too and it helps get my mind off of some of my pain.

Hope you find help wherever it may be. We care for all that are trying to survive constant pain, day after day. Some days when my pain is low I think I can adjust to this and it's not so bad. Other days when I get out of bed stiff, sore and in pain, I just fix a cup of coffee and either go outside on screen in porch in back of house or get in my recliner and get on Facebook to try to take mind off of it for awhile. Sometimes knowing people care helps. We can't take away your pain but the ones who have had it awhile can give you lots of things to try.

Hope you can find a good PCD that will understand and help you.
Keep looking and asking people in your area about a good, caring, dr.
Posted 7/17/2014 4:30 AM (GMT 0)
Another idea is to think beyond regular medical doctors. I was diagnosed by a Physician's Assistant, they are also allowed to prescribe medicine. I've also seen Nurse Practitioners who are also allowed to prescribe. I've found that people in these specialties take more time with me, are more empathetic and understanding and lack the "God" complex that many doctors seem to have.

Tomorrow I will see a Naturapath for the first time to try to get away from all the medication if possible. I've had a HUGE amount of help from an acupuncturist.

I'm lucky that my insurance will cover all of these options. I think every insurance company will cover Physician's assistants and Nurse Practitioners because they are cheaper than MDs.

An important thing is not to be seen as trying to get drugs, particularly pain medications. So many drug addicts have made it so hard for those of us who might need the medication to access it. Doctors are always wary of people faking pain in order to get narcotic medications. Be willing to try anything the medical professional suggests. I've had a lot of help from Savella, though it took time for my body to adjust. I tried physical therapy, but it didn't help, mainly because I think the therapist really didn't understand fibro. But I think my willingness to try anything he suggested helped him believe I wasn't there for drugs -- not to mention the fact that I refused the first two times he suggested narcotic medication.

I hope you are able to find someone who will work with you.
Posted 7/17/2014 4:41 AM (GMT 0)
Right! What everyone else said. It took me so long to find my great doctor, but I did and it's made all the difference.

We're rooting for you. So keep us posted, ok?

Debbie
Posted 7/17/2014 5:51 AM (GMT 0)
My family knows guys with fibro, but both of them deny they have it...with every symptom and some genetics...

That was a great idea about the nurse practicioners...we loved one in our old family practice...i would go on my drs day off so i could see her...she took more time and tried harder...
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