More weird pain stuff~RANT

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Noinsanity76
Regular Member


Date Joined Apr 2012
Total Posts : 35
   Posted 5/15/2012 11:39 AM (GMT -6)   
So, it's been a few weeks since I've posted but I guess I need someone to understand or give advise. This chronic pain is so frustrating. I tested negative for ANA and positive for RF but within normal ranges, so it is considered negative. My joints are on fire and I now have a funky, painful rash due to sun exposure. None of my meds cause photosensitivity, so I guess I'm just crazy. I requested a rheumy 4 months ago and they have yet to make the referral. I'm really kind of pissed since I'll be moving to a new state in 13 days, and I have yet to get any diagnosis for this crap. Uhhhh, I'm really hoping the doctors are better in Washington. mad

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 5/15/2012 12:28 PM (GMT -6)   
Sorry to hear of your troubles..

Who is supposed to be giving you are referral to a Rhematologist? I would just find a GP in Washington NOW...and call ahead and set up an appt. for the week you get into town. This way, they can immediately get a referral to a Rheumy for you.

Also...aren't you on Neurontin and Percocet and some other meds? I know for sure that Oxycodone has listed of photosensitivity in their side effects....

So it's imperative to not be out in the sun without applying and reapplying every few hours 25 spf or higher..And staying out of the sun (or wearing a large hat and long sleeve) in between 10-2.....

I know it's a mixed blessing for the test results...But it's good to celebrate when you don't have a diagnosis of RA or other serious illnesses....

But I do understand that you want to get to the bottom of this pain...

I think a Rheumy is the way to go...I would just stay on top of the new GP and they should be able to do the referral the day you are there or within a few days of your appt.

Good luck with the move!!!
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/15/2012 1:42 PM (GMT -6)   
Noinsanity,

I hear your frustrations - and it IS so frustrating to not know what's going on....

What I hope for you is what happened to me..... we moved to another state, too, before I had firm diagnoses. I was going through all the same frustrations. Well, moving caused a new, "fresh" set of eyes to go through my medical records and hear all my symptoms, etc. With more testing and so forth - the internist there was able to really put together what was going on w/ me. Given the complexity of my health issues.... I know that moving and new doctors led to me figuring out the puzzle.

Like SB said... I would probably try to line up a GP before you move.

Anyway, hang in there.... and let's hope the move brings you success in figuring out what's going on. Good luck w/ the move...

--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/15/2012 8:59 PM (GMT -6)   
Honestly, some GPs are just more knowledgeable/open minded/willing to find the problem/on top of things.

Hopefully, like the others have said, your next GP will be more accommodating and will help you find the cause of things. It doesn't seem like you have many other options because of the move, but start doing some research now and call around. It will be less stressful if you have things lined up.

Have you ever had this rash or a rash before? Could it be something you came in contact with or a food? I'd never had a rash before and then my mom bought a certain type of dryer sheet and I had a rash all over. You never know what could cause an adverse effect.

Noinsanity76
Regular Member


Date Joined Apr 2012
Total Posts : 35
   Posted 5/20/2012 4:26 PM (GMT -6)   
I sure hope so. The photo-sensitivity is becoming a bit of a problem, today, I'm getting the rash again but this time, it is also coming with extreme exhaustion. I have researched my meds and none of them cause photo sensitivity, so who knows. I had my last visit with the PM and he said it was from stress. It's funny though, I would think the rash would occur all over, not just in sun exposed areas. He also says I have fibromyalgia but has never laid a finger on my body. I just need a rheumy!!! I think my PM is an idiot and I can't wait to get into a new doctor. Hopefully, one that is concerned about patients and not the money lining their pockets.
C-PTSD, Severe Panic and Anxiety, Depressive Bi-polar. Chronic pain with no diagnosis. 1800mg Neurontin, 10/325mg Percocet x3, Klonopin 1mg x3, Prozac 20mg, Robaxin 500mg x2. DDD in shoulders and neck, bulge in C5/6 and 6/7. (apparently this is "normal" lol.)
Anyway, still trying to smile and and make the most of life, even when it gets really hard!

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 5/20/2012 4:42 PM (GMT -6)   
Are you on the medications that are listed in your profile signature? Oxycodone, Prozac and Neurontin all can have photosensitivity as a side effect.

Also...have you set up a GP appt. in the new state yet? If not...it really would be best to go ahead and do this now so you are set up and then can get a quick referral.
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Noinsanity76
Regular Member


Date Joined Apr 2012
Total Posts : 35
   Posted 5/22/2012 2:51 PM (GMT -6)   
A lot of the meds have been upped since I last put in my sig, so I just updated it. Thanks Snowbunny, no one ever tells me that these can make me photosensitive and I have checked it out and haven't found anything about it on the internet. Still, I figured it had to be something related to my meds (grrrr). I'm also just coming out of a severe flare, so it could all be due to that? My body is so hard to figure out these days, can't wait to feel somewhat normal again!
C-PTSD, Severe Panic and Anxiety, Depressive Bi-polar. Chronic pain with no diagnosis.(Possible diagnosis of Fibromyalgia.) 2400mg Neurontin, 10/325mg Percocet x4, Klonopin 1mg x3, Prozac 40mg, Flexeril 10mg x2. DDD in shoulders and neck, bulge in C5/6 and 6/7. (apparently this is "normal" lol.)
Anyway, still trying to smile and and make the most of life, even when it gets really har

shiningsunlight
New Member


Date Joined May 2012
Total Posts : 1
   Posted 5/23/2012 9:44 PM (GMT -6)   
I went through a similar situation, I was very sick with flu like symptoms and in chronic pain throughout my body while trying to seek help to alleviate the pain to function and determine a cause of the illness to get better. It began over a year ago now, it took a month and a half to see a fibromyalgia specialist and finally get treatment for my pain and another three months for one of my lyme tests to read positive. If you go to the rheumy and come up with no answers. You may want to seek a specialist of fibromyalgia. Rheumatologists look for evidence of a debilitating disease through labs and imaging such as arthritis, Lyme, etc. Fibromyalgia goes undetected in those types of tests, lyme disease can go undetected too, symptoms of chronic Lyme mirror fibromyalgia, and Lyme can cause Fibromyalgia. If you should be diagnosed with Fibromyalgia it would be ideal to be rechecked for Lyme Disease to assure it is not causing symptoms of or was not the cause for Fibromyalgia.

Wishing you all the best
Erin

Ryobi
Regular Member


Date Joined Apr 2012
Total Posts : 114
   Posted 5/23/2012 11:48 PM (GMT -6)   
I also had a similar experience I was first diagnosed with Fibro after repeated tests for arthritis, then last year my rheumatoid test came back high so finally I had that diagnosis, same with my thyroid my doctor porbably ran that test 6 times and last month it came back positive. I also have a neighbor who is a PA and has alot of similar problems, she told me once you have one auto immune you almost always get three. Another thing my doctor has always though I had was celiac as well, She said her doc thought the same but blood test kept coming back negative. So her doctor finally sent her to be scoped and they did a biopsy and the biopsy came back positive for celiac. So never give up if you feel it there is most likely something wrong you just have not found a good inough specialist to find it. Hope you find one soon!

Noinsanity76
Regular Member


Date Joined Apr 2012
Total Posts : 35
   Posted 5/24/2012 2:41 PM (GMT -6)   
Thank you guys for your response, after reading everything I've read it seems to me like Fibromyalgia is the stepping stone for all the other stuff, RA, SLE, Lyme...etc. Whatever rheumy I get, I will be pushing them hard because while I do have A LOT of Fibromyalgia symptoms, my pain stems in my joints and then radiates. So whenever I take Neurontin, it improves the radiating pain but my joints are killing me. I really appreciate your response, it makes me feel less crazy!!!
C-PTSD, Severe Panic and Anxiety, Depressive Bi-polar. Chronic pain with no diagnosis.(Possible diagnosis of Fibromyalgia.) 2400mg Neurontin, 10/325mg Percocet x4, Klonopin 1mg x3, Prozac 40mg, Flexeril 10mg x2. DDD in shoulders and neck, bulge in C5/6 and 6/7. (apparently this is "normal" lol.)
Anyway, still trying to smile and and make the most of life, even when it gets really har
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