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Getting a little beyond all of this. Sick of everything.

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Chronic Pain
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Posted 4/27/2013 9:11 AM (GMT 0)
I'm tired of doctors. I'm tired of medical records that contain so many inaccuracies as to not even represent a real history. One of them is so laughable where a doctor claims to have done an exam that they didn't do. Some of them are just grossly inaccurate.

I'm tired of fighting with social security. I'm tired of fighting with medicaid. I'm tired of doctors yanking me off of the few drugs that help, and when no benefit results keeping me off of them -- even though going off of them doesn't address my #1 complaint - severe, overwhelming, life destroying fatigue, and cognitive impairment.

I went from a 4.0 student with a full load to barely being able to handle 1 3.0 class once a week at the exclusion of a great many other things from my life. I'm losing roughly 1 day in 2 completely, and the day that I am getting I am lucky if I can concentrate for 3-4 hours, and its still nowhere near where my ability to concentrate was only a couple years ago. They took me off the experimental treatment that kept the RA and Fibro in check. RA stayed suppressed, fibro came back but not as severe. Fatigue just worsened after a few months off. They took me off of my pain meds, fatigue definitely worsened as did the pain. Basically I've been left out to dry by the docs because I improved on the experimental treatment almost enough to not have the diseases, and they can't figure out what is causing the severity of the fatigue. They wont let me back on the experimental treatment, they won't do decent pain management, and I'm stuck here.

Okay, so they are sending me to evaluate some cardiac stuff, and maybe the problem is there. I have sleep apnea, but they tell me its not severe enough to account for it. That didn't stop them from questioning it and ordering another sleep study. In the meantime, I'm still fighting the same stuff. The whole thing gets old. I'm just at the end of my rope with this stuff. I can't get done the things I set out to do as long as I'm feeling this way, and I don't feel like things are being addressed quickly. This has been dragging on for just shy of 3 years. Its not the fibro fatigue -- I can deal with it. Its not the fibro cognitive impairment -- I know what that is like from a decade plus of having it, and this is different.
Posted 4/27/2013 10:47 AM (GMT 0)
Sorry Timbertea that your battles are many. I don't think I've welcomed you to the forum so glad you've joined us. This is a great place for support and advice.

As for the war of obtaining all the things vital to a life with chronic pain I would say pick your battles wisely. 1st is to find a Dr whose willing to relieve your pain and work with you to take on some of the others such as Medicaid, Social Security and finding answers for you.

I would say my Drs my greatest asset. Together we have brought down my pain levels,found alternative ways to help what the meds miss,he advocates for me if my insurance company or Medicare doesn't want to cooperate. I'm fairly certain his diligence in properly answering SS questions and keeping good records played a key roll in my award.

I abide by my contract and do as he recommends and in return he provides the means to give me the best quality of life possible. If your current Dr doesn't provide that for you and it seems he doesn't then that certainly would be my first battle, finding one who Will.
Posted 4/27/2013 1:59 PM (GMT 0)
Welcome here to HW CP. Appreciated your vent, and it is well justified. Can't offer you any direct advice, only to never give up hope.

david in sc
Posted 4/27/2013 11:22 PM (GMT 0)
Timbertea,

Just wanted to welcome you to the forum. I'm sorry that you're having to deal with so many issues with the Dr's. I know how totally frustrating that can be. I too have RA and Fibro like you and I know they can be so painful. It sounds like your Dr isn't providing you with any pain relief for those conditions.

I would have to agree with Vickie, it sounds like you need a second opinion, if you can do one. I think that if you had a Dr that was pulling for you then a lot of your issues with Social Security and Medicare would be gone. I know my Dr's all do what they can to help me when I have issues with either of those two for me.

I was noticing that you mentioned that fatigue is life altering and severe, have you ever had a sleep study? I know that many people with severe sleep apnea has severe fatigue and cognitive issues. It's just a thought, I have both Central Sleep Apnea and Obstructive Sleep Apnea and now that I'm using a VPAP machine my fatigue had/has improved for awhile. I have other health issues that are now affecting my fatigue.

I hope they can figure out your Cardio stuff real soon, and if it's causing you problems that they can get you fixed right up ASAP. I can hear your frustration about school, I'm sorry that all of this has affected you so much that you've had to drop down to 1 class at at time.

Hang in there and know that we're here to offer support anytime you need it.

Hugs,
Barbara
Posted 4/28/2013 12:25 AM (GMT 0)
Hi timbertea Welcome to our chronic pain forum. I'm sorry that you have so much pain. I would advise you to find another doctor that will help you with your pain, Social Security, and medicaid. I've noticed that a lot of people with RA and fibromyalgia see a specific doctor for that, which I can't think of right now. shakehead

I hope you can get your pain under control really soon. Take care

hugs
loretta

ps can anyone else tell me the name of the specific doctor that you see for RA and fibrro?
Posted 4/28/2013 11:35 AM (GMT 0)
I've felt like this many a time, can empathise very well.

I was in the middle of doing a pretty high-level degree at university, then was struck down with unexplained massive fatigue and illness, eventually diagnosed as ME or CFS. Was out of action for close to three years, until eventually I came down with appendicitis, had that out and got better after that. So it went un-diagnosed for all that time.

Fast forward a year later and I now have a massive neuropathic pain problem which is kind of destroying me, albeit in a slower way where I can do a bit more activity than before.

So yeah, sometimes I also feel like enough is enough and there is no way out. But keep going one day at a time and things will eventually stabilize hopefully. Good luck.
Posted 4/30/2013 3:25 PM (GMT 0)
Welcome timbertea, my sympathies are with you, especially on the sleep apnea part. I was roughly treated through two session, one for obstructive which it was obvious I didn't have and one for C-Apnea, with the mask that makes even the idea of sleep laughable. It sounds like you might have ADHD aggravated by your meds. Thats what I was Dxed and received an Rx of # 90 Amphetamine salts combo, 3/d. They improved my concentration immeasurably. There a re written tests that you can take at a psychiatrists office that will self diagnose you and by our description you are a good fit. I have been on this combo of Opioids and the Salts for six years with full approval from ALL of my Drs. and being a cancer patient with Osteo-POROSIS, I Have a LOT of docs.
I'm sure that there will be some naysayers on the board, calling this mixture a "Speedball" but consult your physician before listening to naysayers that reject a treatment they have never heard of in all their days, let alone tried it. ADHD is pooh-poohed as an excuse to get uppers by a lot of people but the difference this combo, also known as Adderall IR, has been a lifesaver as far as cutting through the opioid fog that my necessary meds put me in. Best of luck and the least of pain . . . Q
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