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Bassar
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/13/2012 5:39 PM (GMT -6)   
I'm totally new to this forum and this is my very first post and I'm just looking for some support and to introduce myself.
 
So here's a little bit about me... I've been in constant pain (some days are much worse than others) for 5 years. In 2007 I went to the doctor because I felt like I had the flu for 3 months. They tested me for mono at the time and that's not what I had. Then in 2008 after being in pain for a year a doctor diagnosed me with fibromyalgia because he didn't see anything from my blood test (just regular blood test). For years I had some not so great doctors that didn't fully believe I was in pain so I didn't find relief and I just became worse. The fatigue started to rule my life. I'm a field biologist so I've always had a physically demanding job in remote locations.
 
Fast forward to now.. After moving to a new city I found a new doctor who right away after listening to me and looking at my records thought that I might have Lyme disease. I kept track of my temperature for 3 months and I was always running a fever. She sent my blood to a special lab and it turned out that I didn't have Lymes, but I did have a blood infection with biofilm communities. The lab is currently doing more research and I'm on anti-biotics, but my doctor said it should take a minimum of 6 months and then we'll see if the infection has lessened.
 
I'm very hopeful that after I'm done with the antibiotics (which make me feel so much worse) that perhaps the pain will start to go away. My doctor did tell me though that I could have fibromyalgia or a form of pain for the rest of my life from the severity of the infection and how long it's been in my system.
 
It's so hard to still do my job since I'm in so much pain and so fatigued, but I do need to be able to support myself. I'm just looking for a way to be able to keep going and stay positive.
 
Thanks,
 
Bassar

Diagnosis so far: unknown bacterial infection (doc thinks at least 5 years, as long as I've been in pain), daily fevers, night sweats, constant joint and muscle pain, migraines, herniated disc C4-5

Right now I'm just trying to find a better way to deal with the everyday struggle, trying to stay positive :)

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/13/2012 6:49 PM (GMT -6)   
Hi Bassar Welcome to our chronic pain forum. I'm glad you found us, but I'm sorry that you're having so much pain. I hope that your doctor will be able to get a hold of the infection you have and get rid of it soon. I don't have fibromyalgia, but I do have chronic back pain from several issues in my back, so I do know what pain is about. I hope your pain lessens as the infection goes away. Good luck to you. Take care.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 6/13/2012 11:59 PM (GMT -6)   
Hiya Bassar and welcome :)

I have Fibro amongst many other problems so I can understand how hard it is for you. Your job sounds demanding but cool. I was an industrial x-ray tech before I became disabled and that is a fairly hard job physically but I loved it!

I hope you feel better soon. Are you going to have surgery on your neck? I did a few years ago and it was really nice to be out of pain and feel my fingers again lol.

Keep coming back! There are some really nice people here.
Chronic pain, Depression, Fibromyalgia, Tennis Elbow (both arms), Arthritis (knees and fingers), Diabetes. Ruptured disk L-4, Severe degenerative damage L5-S1, ACDF C6-C7

Bassar
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/14/2012 6:37 PM (GMT -6)   
Thank you all very much.

I'm not planning to have surgery right now. The doctor said the radiculopathy down my right arm would need to be worse than it is before they would consider surgery, they're not as worried about the pain it causes. My primary care doctor wants to get the infection under control first.

The hardest thing for me is dealing with work. It's very physically demanding and it's not like I'm able to take a sick day when I need one. I just have to fight the pan and fatigue and push through the work day. Right now I'm happy to just have a job, so I'll just keeping pushing. I do have a back up person for the job, but they're on another project so really advanced notice is needed. On Tuesday I was able to ask to have today (Thursday) off. The pain was becoming unbearable even after on the 2nd day of the work week. I'm glad I was actually able to have a day off because I ended up waking up today with a horrible migraine this morning. I was able to take my meds and eventually go back to sleep. The pain is at least under control now.

This all began when I was still in college and I'm only in my mid 20s now. It's so hard to stay positive and keep going, but I am very lucky to have family who cares and is able to listen. I also have the best dog someone dealing with pain could ask for. He's a 3 year old Shih Tzu and he can tell really tell when I need some comfort. He's so calm and he won't leave my side for a second when I'm really in pain.
Diagnosis so far: unknown bacterial infection (doc thinks at least 5 years, as long as I've been in pain), daily fevers, night sweats, constant joint and muscle pain, migraines, herniated disc C4-5

Right now I'm just trying to find a better way to deal with the everyday struggle, trying to stay positive :)

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 6/14/2012 8:53 PM (GMT -6)   
Bassar,
Welcome to our forum and i feel sorry for the amt of pain you are in. I hope you get relief soon.

We have warm caring members who will pop in and share their experiences.

Feel free to read the rules of posting, you are doing fine.

Nice to meet you.

Betsey
Age to a woman is like krypronite to Superman.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 6/14/2012 11:04 PM (GMT -6)   
Maybe seek out help with a rheumatoid arthritis doctor, aand getting a hand or foot mri to rule out form of ra that can b caused by an infection, look up "seronegative rheumatoid Arthritis, I ws finally dx'd with that last year, but just a thought...
Hope your doing better soon keep us posted as we do care, well wishees.
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16381
   Posted 6/15/2012 6:30 PM (GMT -6)   
Hi Bassar and welcome to the chronic pain forum. I am a little late popping on here. May I ask what kind of a dr that is treating you for this infection? Did your dr say how you contracted this blood infection and what caused it? You said the dr said you would need to be on the antibiotic for a good 6 months. What is the chances of the infection becoming resistent to the antibiotic and it stop working? Six months is a long time to stay on one antibiotic. Have you considered getting an appt and be seen by an infectious disease dr? I think if this were me, I would gather up all of my records and have a consult with an infectious disease dr, those guys have seen every kind of bug around. He could possibly work with your current dr on this if he had any recommendations.

I have had some dealings in the past with an infectious disease dr with my husband and it was amazing how quickly he picked up on things in less than an hour after checking my husband out, than the guy that admitted him to the hospital and had treated him for three days with no results.Don't get me wrong, I am not saying that your dr is not taking care of you, it never hurts to get another opinion and I do have concerns about the antibiotic thing.

Please keep us posted on how you are doing. Take care.....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/15/2012 7:08 PM (GMT -6)   
Welcome to the boards...

I absolutely agree that if this wasn't an infectious disease specialist..(or even if it is) I would be getting another opinion.

I would be seeking a lot more answers before I started on 6 months of antibiotics...As mentioned...being on them that long can have reverse effects...

Is the particular Dr. who diagnosed you asking you to pay for anything else like vitamins or supplements or anything like that?

I would be asking what type of blood infection..Ask to see the results...where did they find the infection primarily?

Biofilms themselves are organisms that in our mouth...are needed for good dental health...

It seems strange to me that a Dr. would even think to test for something like this...

Anyway...I just think when someone diagnoses you with something that is not heard of very often...I would be seeking 2nd and 3rd opinions.

I contracted Dengue Fever on one of my trips to Africa and needed antibiotics for 4 weeks. It's obviously not the same thing as you....but there are mixed studies/Dr. opinions on being on long term antibiotics especially because it can open your immune system up to other more serious infections..

And lastly....I'm sure you know that none of us are Drs. We are just sharing our own personal thoughts/opinions...

It's a great board and you will find very caring and empathetic people here!
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
 
 

lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 6/16/2012 12:37 PM (GMT -6)   
I first had to learn if pain was muscle or nerve...then what to do about each. MY nerve pain was BURNING and stabbing/stinging. MY muscle pain was slight burning but aching...deep. RFA helped w/herve pain and meds help with muscle. And I use press/release with water jets / pool for muscle release as well. Helps some. Good luck!

Bassar
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/16/2012 10:34 PM (GMT -6)   
Thank you all.

So far this is my 3rd antibiotic, doc is trying to make sure I don't create antibiotic resistant bacteria. I will see an infectious disease doctor as well soon. There is a lab currently working on figuring out what I have. The blood test showed I had a high quantity of bacteria in my blood and also bioflim communities with the bacteria imbedded.

From the time I was in pain starting in 2007 I was in college and spending a lot of time in the woods for classes and work. That's when I think I contracted whatever I have, my symptoms have been similar pretty much since then. I just had countless doctors just say it was fibromyalgia and not look further into it until now. They've been progressively worse in the past year because my stress level from the amount of time spent at work has been ridiculous. It's a definite struggle to keep going with work.

Also recently (late March) I felt like I've had an ear infection in my left ear. Doc said I had no sign of ear infection, but since I was starting antibiotics the doc said if I did it would probably clear up. Well, the pain, feeling of fullness, sporadic loud ringing, and some hearing loss has gotten worse. I'm seeing an ear doc this coming week to check whats up, I was told possible Meiners disease. I would love to have a little relief.

Thanks, and I hope you all are doing okay.
Diagnosis so far: unknown bacterial infection (doc thinks at least 5 years, as long as I've been in pain), daily fevers, night sweats, constant joint and muscle pain, migraines, herniated disc C4-5

Right now I'm just trying to find a better way to deal with the everyday struggle, trying to stay positive :)

Bassar
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/17/2012 12:37 AM (GMT -6)   
Thank you for the input, I appreciate it. I wasn't on anti malarial meds then since I wasn't in an area where malaria is found (Iowa). I am an Army brat and have lived all over the world, just haven't been out of the US since 2001. There's only speculation on what I have right now. Don't even know exactly when I got it really. The pain started in 2007, but who knows. I am taking probiotics daily and eating really healthy, so I'm doing the best I can.
Diagnosis so far: unknown bacterial infection (doc thinks at least 5 years, as long as I've been in pain), daily fevers, night sweats, constant joint and muscle pain, migraines, herniated disc C4-5

Right now I'm just trying to find a better way to deal with the everyday struggle, trying to stay positive :)

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/17/2012 9:43 AM (GMT -6)   
I think the Infectious Disease Specialist will be the one to help rule out/in anything as they literally will test for everything known to man that you could have possibly been exposed to.

As you mentioned...except for very small outbreaks in Mexico...North America does not have any outbreaks of Malaria so that is not a concern for you.

Do you have an appt. set up with the ID Dr. yet? Hopefully it is soon so you can start getting better answers...
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
 
 
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