So much wrong and I feel very overwhelmed

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missyk1970
New Member


Date Joined Dec 2010
Total Posts : 9
   Posted 12/13/2010 4:43 PM (GMT -6)   
I just returned from the Mayo Clinic in Jacksonville Florida after 4 weeks of tests, appointments and specialist.  So far I have been told I have fibro, migraines, 3 bulging digenerating discs in my neck, depression, anxiety, extremely low vit D, B12 and folic acid, thyroid nodueles on the remaining side of my thyroid, precancerous colon polyps, adult ADD, a blood borne tick disease not sure which one yet but not Lyme, athritis in knees, hips and spine and high blood pressure.
 
I am sure I missed something but that is all I can remember right now. 
 
I can only remember 2 days I have not been in pain since June of this year and I am now going to a pain clinic on Dec 28th.  I am really not sure what to expect.  My Mayo doctor mentioned various treatments for my head and neck pain and for my fibro.
yourself
I feel so overwhelmed with all of this, I had been getting sick for the last 2 years and when I was hurting my dovtor would give me a shot and I would go on.  Then in June I could not take it any more,  my husband said it is almost like he was living alone for the past 6 months because I was usually in the bed and very out of it.
 
I have been on so many meds and have had some bad reactions to migraine prevenative meds so I am not on one now, I think my doc is scared to try something else and he is going to let the pain clinic deal with it.
 
How do you deal with the pain on a daily basis?  How do you make yourself not overdo it when you are feeling ok?   I do that and as a result I am in the bed for the next 3 days in terrible pain.
 
I guess I just need to talk to people that understand how much pain I am in.  I look healthy, I am  young and most people look at me and think I am fine and I feel like they are judging me because I do not look unhealthy or ill.
 
I am just so glad I found this forum smurf

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/13/2010 6:44 PM (GMT -6)   
Dear Missy,

A very warm welcome to the forum!! I'm glad you found us too!

I'm so sorry that you're going through all of this though! I do understand how difficult it can be to be ill yet not LOOK ill...people just don't understand what you're going through!

I definitely understand though...I have 6 autoimmune diseases and severe fibromyalgia, plus at least 4 tick-borne diseases: Lyme, Babesiosis, Ehrlichiosis (HME), and Bartonella. I too developed degenerative disk disease because of a tick-borne illness; the Lyme spirochetes LOVE collagen and have chewed up my spinal disks, causing DDD to accelerate way beyond the normal rate for aging. So I have disks impacting spinal nerves at L3-L4 and L4-L5.

I take Dilaudid 4 mg tablets for the pain, as well as Lyrica + Cymbalta for the fibro.

I too suffer from migraines, hypertension, and very low vitamin levels, plus high viral loads (EBV and CMV). Some of the autoimmune diseases were likely triggered by the Lyme, as was the fibro. I have a TON of neurological symptoms like "brain fog", confusion, memory loss, blurry vision, vertical double vision, vertigo, switching letters and words when I type, trouble with speaking at times (slurring words, even biting my tongue!).

I've been sick for more than 5 years. I used to teach college math....I had to quit that job because I can no longer do arithmetic in my head. And I have 3 degrees in physics!! sad

How did they determine that you don't have Lyme disease? Did they do a Western Blot? Do you have a copy of the results? Do you know if any of the bands were positive?

Just wondering.....because if they used the so-called CDC or IDSA criteria for a "positive" Lyme test, it will almost guarantee a negative test result, whether you have Lyme or not! Those criteria are ridiculous and they are NOT supposed to be used for diagnosis!

According to most Lyme experts, if even one or two bands that are Lyme-specific were positive, you almost certainly have Lyme, particularly with your symptoms! Each different band means a certain type of antibody to a specific protein in the body or the flagellum (tail) of the Lyme spirochete.

Bartonella and other TBI cause a lot of symptoms too.....here is a "short list" of common symptoms for some of the most common tick-borne illnesses:

www.anapsid.org/lyme/symptoms/tbi-symptoms.html

Also, here's Christine's great site that talks about being sick but not LOOKING sick:

www.butyoudontlooksick.com/articles/guest-writers/lost-in-the-land-of-the-undiagnosed

You should also read Christine's "Spoon Theory" post, it's wonderful (and I think it will answer your question about how do we balance our daily chores and try not to overdo):

www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino

Even if you don't have Lyme disease, you should also check out the Lyme forum here on Healing Well, most of us on that forum have more than one TBI (tick-borne illness) and we discuss the symptoms of the others as well.

Please feel free to email me privately at any time. Just click on the little envelope on the left-hand panel.....

Take care, you're in my thoughts and prayers!
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Malarone, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

http://forty-two-joann.blogspot.com/

Post Edited (nasalady) : 12/13/2010 4:49:34 PM (GMT-7)


Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 12/13/2010 8:11 PM (GMT -6)   
Hi, MissyK,

Wow! You have a lot of new information to process. No wonder you are feeling overwhelmed!

I know it is tough to feel so ill and look so good. People make judments that they shouldn't, and quite frankly, I don't think anyone can understand the debilitating issue of chronic pain until/unless they have experienced it.

I have been in pain daily since May of this year...well actually for ten years, but in May it was so bad I could not walk. No kidding...I couldn't walk because of the pain in my feet. I was scared and overwhelmed, too.

I have asthma, high bp, fibromyalgia, OA, Inflammatory Arthritis, High Cholesterol and I am subject to depression when I am a lot of pain for a long period of time. I have DDD, DJD, bulging discs and I need to lose weight!

That being said, I found all this info SO overwhelming that I decided to take one day at a time and address the issue that was most affecting me on that day. I have worked w/my NP and two specialists to get the medicine that is best for me, and I have finally given in and started taking pain medicine. That has been a god send to me. I can function again. I can't run any races, and I don't have loads of energy, but I can function and have some good days.

Don't give up. You and your physicians can sort this all out and come up w/meds that will help you live your life to the fullest. This is up to you, but I have chosen to save what energy I have for the most important things in life...my husband, my family, my friends, my pets. If the laundry doesn't get done today, the earth won't stop spinning on its axis. That's my attitude, and I'm sticking to it! LOL

Best wishes to you,

V
Fibromyalgia, Inflammatory Arthritis, Osteoarthritis, Asthma
Plaquenil, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol
Be Kind To Others For Everyone Is Fighting Some Kind of Battle

Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 2052
   Posted 12/13/2010 8:37 PM (GMT -6)   
i don't know...i feel overwhelmed too. now i am beginning to think i am too old for them to care about. before i thought people were upset that i was too young to be receiving medicare.

am in so much pain lately and unhappy. my little life is getting smaller and smaller. i am EXTREMELY TIRED.

so long and hope you all feel better soon. missy, that is a lot of bad information to take in. i react very poorly to medicines too. (allergic to drugs and hypersensitive to drugs). the whole thing can feel like a nightmare sometimes but you are not alone.

missyk1970
New Member


Date Joined Dec 2010
Total Posts : 9
   Posted 12/13/2010 9:46 PM (GMT -6)   
Thanks so much for all the information and well wishes.
 
I recieved the results of my tests form Mayo along with the doctors advice.
 
Here are some of the things listed:
 

HCE IgG antibodies were positive infection with anaplasma phagocytophilia- should be followed up with infectious diesese specialist

Fibromyalgia

migraines with visual problems

Insomnia

high blood pressure

depression

anxiety

possible ADD

Low Cort AM- should be rechecked stimulation test, if still low need a Cortrosyn

Low B12

Low Folate

Low Hydroxy D total

Low Hgb

Low Hct

Low RBC- anemia

Low MHC

Low MCHC

Low Eosinophils percent

Low TIBC

Hi Iron

Low Ca

Low Creatinine

U Bacteria Present

Squamous Cells Present

Patient should under go further evaluation to determine the cause of B12 deficiency

Chest x-ray reveled a small nodular opacity projecting over the right anterior rid

arteriole narrowing

early presbyopia

mild hyperlipedemia

mild diffuse spondylosis of the spine

mild broad based disc bulging at C4-C5 through C6-C7 caused mild ventral thecal sac effacement

two blind spots in vision

mild tricuspid valve regurgitation

boarderline left atriel enlargement

2 oligoclonal bands present

EBV vca/IgG-positive

EBNA-positive

 

I have no idea what most of this means, I guess they will explain it to me at the pain clinic.

All I know is it seems like a lot on top of the things I already knew about before going to Mayo.

 

 


missyk1970
New Member


Date Joined Dec 2010
Total Posts : 9
   Posted 12/13/2010 9:51 PM (GMT -6)   
Vannie I am getting better about letting the unimportant things go and focusing on what really matters, my family.

Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 2052
   Posted 12/14/2010 8:51 AM (GMT -6)   
good for you on letting stuff go...i say as an asthmatic, i can't blow it off but i can puff it off. (this used to be a big expression...blow it off as in forget it).

merry something

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 12/14/2010 8:53 AM (GMT -6)   
Wow Missy,

That is alot. It sounds like you need more than just a pain clinic. Have you taken those results to your PCP? They should be getting you on meds asap for some of this stuff. You should also be seen specialists for many of them. PM can only do so much. You need some real specialists in these areas. It's no wonder you are feeling overwhelmed.

I hope you will find some good medical care soon and be on the mend by Christmas or New Years.

All my best!
Retired Mom

missyk1970
New Member


Date Joined Dec 2010
Total Posts : 9
   Posted 12/14/2010 1:28 PM (GMT -6)   
I am on some meds already; Xanax, prestiq, cyclobenzaprine, elavil, gabapentin, maxalt-mlt, sumavel dosepro, b12 shots, vit d pills and folic acid pills.

My PCP has not found a preventive migraine med I am not allergic too.
I have daily migraines, he added the sumavel and maxalt after I returned from Mayo.

I just got the Mayo report yesterday and a copy was sent to my PCP also. I have an appointment with him in Feb. Do I need to make one sooner to talk to him about these results? I was thinking I would if the pain clinic did not make referrals or handle some of this on their own, my apppointment with them is Dec 28.

I have a gastrologist and a thyroid doctor, I have called both of them.

I also filed for disability, which was a hard thing for me to do but I can not work like I always have, some days I can not get our of bed.

Thank you all so much. It is so great to have people to talk to.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 12/14/2010 2:00 PM (GMT -6)   
I would also say to make an appointment with a cardiologist the high blood pressure needs to be looked at
and that's one of the things that had me concerned on your report and high blood pressure can cause
headaches and other issues plus making your pain worse, ask your pcp about being on an omega 3 supplement,
such as Lovaza, Lovaza needs a prescription, but it should help some, then you can easily
supplement the vitamin b-12, I'm low on that too and I take it one under the tongue, and I
get vitamin D supplemented one twice a month those will also help some with pain...
But please get an appointment with a cardiologist to get checked, k...
(((((((((((((((((((((((((((((((((((((((((Missy))))))))))))))))))))))))))))))))))))
healing Hugz and Prayers, keep us posted on how your doing...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

missyk1970
New Member


Date Joined Dec 2010
Total Posts : 9
   Posted 12/14/2010 2:25 PM (GMT -6)   
Thanks and I will talk to my PCP and get the appointments made.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16776
   Posted 12/14/2010 3:52 PM (GMT -6)   
Missy you have so much on your plate and it just seems unfair at times at best. But, the only way any of us make it through, is one day at a time. Otherwise, we would be just going around in circles getting nothing done.I would imagine your drs will deal with the most critical needs first and work their way through. Be prepared to get told it will take awhile. By the way, the Mayo Clinic has a great website to look up and read about different types of conditions.

As for the over doing, well, it just human nature for us to overdo when we have a good day because we never know when the next one will be. Learning to pace yourself does help alot. Don't set yourself up trying to do too many things in one day either. So, if you are having a rough day, then do one small project, whether its washing and drying one load of clothes or running the dishwasher.

Try to take someone with you to your dr appts to just hear what the dr says so you can keep it all straight in your mind. Take notes, but above all do not be afraid to ask questions either.

Take care.
Moderator Chronic Pain Forum

Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 2052
   Posted 12/14/2010 4:30 PM (GMT -6)   
you have to become your own child and say would i be mean to my own child and tell her to go to school if she was very sick or in a great deal of pain. hope you feel better and try to enjoy something each day like a pleasant cup of tea or coffee or fruit juice.

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 12/14/2010 4:51 PM (GMT -6)   
Hi Missy and a warm welcome to you . You have a lot to deal with and I really want mention that talking to a pain therapist would help you a lot . I speak to one every week and they are professionals that can help guide you thru a very difficult time in your life . With so much to deal with you should be overwhelmed at times , ane seeking help like a therapist and support like coming here are good things to help you thru this . I was in horrible pain for 2 years after a life of great health and I was very deppressed , but getting support from the wonderful family here and seeing a Pain Therapist helped me to get thru it . Please consider this , most towns have mental health clinics that are either free or low cost , their are groups where you can meet and get support from fellow pain sufferers . The best of luck to you Missy , hang in there you can make it !! Do you know about our chat night on thursdays ? Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Saw the surgeon and I'm really healing great ! Been in physical therapy for almost 2 months now and I can walk pretty well , only going up and down stairs is still a little tough so one step at a time , but that's because of my knee not my hip , but I can walk again , no cane , just me !!

missyk1970
New Member


Date Joined Dec 2010
Total Posts : 9
   Posted 12/14/2010 4:54 PM (GMT -6)   
Thank you all so much. I am having a rough day and I enjoyed a long soak in the tub.

I understand what you mean about being my own mother. And no I would not
make my children go to school if they were ill.
Fibro, bulging discs in neck, IBS, depression, anxiety, high BP, arthritis, low b12,D, migraines with vision problems, thyroid nodules, precancerous colon Pylps

missyk1970
New Member


Date Joined Dec 2010
Total Posts : 9
   Posted 12/14/2010 4:56 PM (GMT -6)   
And I did not know about the Thursday chat nights, what time?
Fibro, bulging discs in neck, IBS, depression, anxiety, high BP, arthritis, low b12,D, migraines with vision problems, thyroid nodules, precancerous colon Pylps

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 12/14/2010 4:57 PM (GMT -6)   
Dear Missy,

I just wanted to stop by and say welcome to the forum! I am very sorry that you had the need to search for us but very happy you found us! Wow....you have a lot on your plate! That is a lot to try to accept and I am sorry it was all thrown at you at once! Please know that the friends you find here really do understand and care about you! Keep us updated!

Take care of you!
Beckey
Rheumatoid Arthritis, Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus

Medications - MS-Contin, Plaquenil, Cymbalta, Famotidine and currently Prednisone

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 12/14/2010 6:31 PM (GMT -6)   
Missy,

I think you are doing a great job following up on all of this. I would suggest a telephone call to the PCP to verify receipt of the report and to ask if they want to see you earlier than scheduled. This will ensure you are on top of things without having to go through so many hoops. Also, I don't know your financial situation (I'm not asking) and I don't know your insurance situation, but the end of the year is fast approaching and can change so many things when it comes to co-pays, insurance plans, covered dr's and out of pocket expenses. I just don't want to see you get caught up in insanity with everything on your plate.

Again, I do think you are doing a great job!!! It's a lot to handle at one time. I'd have a Dr coordinate everything possible to remove that part of the complexity.

Good luck!
Retired Mom

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 12/14/2010 6:52 PM (GMT -6)   
Ms. KY, I hope that your visit is a sucessful one. Just remember that being honest and open is important in the long run and that you might feel uncomfortable for the first 2 visits. Try to be as detailed as you can in describing your pain and have a written history in front of you if possible. On the same notepad, prewrite any questions you expect to ask as having this ready should aliviate some of the anxiety.

As for being on Xanax, I think that is an excellent choice for panic attacks, but for long lasting anxiety I personally feel its not very effective. Have you considered asking your doctor to put you on a longer acting anti anxiety medication? This can also diminish rebound anxiety experienced when the xanax wears off.
MRI revealed disc bulge and test injections revealed RA. Radio Freq procedures have decreased the severity of pain by about 1/3rd. Was on Nucynta (tapentadol 50mgs) for several months, but due to a decrease in pain, I now used Tylenol #3 with Codeine and .5 mg Klonopin. Go ahead and laugh but the Codeine works well ;)
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