What would you do?

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HTG
New Member


Date Joined Apr 2010
Total Posts : 17
   Posted 4/2/2010 7:39 PM (GMT -7)   
Hi, I'm new here, not looking for medical advice, just wondering what other folks with fibromyalgia would do in my shoes.

Of course to decide, you'll need some background information, that's where this will get long. I'm 30, been sick off and on since the onset of menstruation, somewhere around age 9. As that would imply, I'm heavy. I've always been overweight.

Several years ago, I was kind of diagnosed with FMS/CFS by a rhuematologist who doesn't distinguish between the 2, or officially diagnose them, since they are "diseases of exclusion and we can't exclude everything." He treated me with Tramadol and Flexeril and I felt better so he sent be back to my regular doctor, who treated me with the same.

Then in late 2005 I got sick again, really sick. By March 2006 I was diagnosed with IBS, food and environmental allergies, kidney stone, a horseshoe kidney and a bout of acute kidney failure from the stone / kidney combination. I went on meds and a special diet for food allergies (low carb, gluten free, no processed foods) and lost a lot of weight and felt better. However, I still got frequent UTI's and kidney stones. My doctor blamed my diet and at her urging, I ate more carbs and stopped the antifungal meds I was taking for Candida allergy.

Then, my doctor moved out of state, I had a tooth go bad, had to have 2 pulled and 2 filled over a span of 3 months. Since then I've had constant nausea, diarrhea, weight gain, stomach pain and insomnia again. I tried my doctor's replacement. The first treated me for an ulcer and a UTI, did a thyroid and metabolic blood test. I don't know exactly what was tested, the office won't let me look at my chart. He took me off all meds (Tramadol, Flexeril, Claritin, Sudafed, Nystatin) He also asked me to monitor my blood sugar because they were a little bit high. He left before I could follow up, and the nurse practitioner told me my blood work was fine, I'm not diabetic, my urine culture was negative. Since I was feeling worse, she ordered a CBC and put me back on the Flexiril so I could sleep again. Before that came back, I developed pain in the lymph nodes so I made another appointment, saw another new doctor who was terrible. I overheard him in the hallway complaining about having to see me. He didn't do anything for the new pain, just gave me more Nexium and told me to try that for 10 days (same as the first guy did). When I called back and complained, the nurse practitioner ordered a CTscan of my neck and pelvis and a stool analysis, since i have so many pet animals. Those came back negative and the nurse practitioner was going to call me back with some sort of game plan about what to do next. They never did.

In fact, only after I called to inquire about how to get my records, did they send me a letter telling me to stop all meds again, start amitriptyline, and stay away from my house for 2 weeks so we can rule my pets out as a cause for my illness.

Then I got another UTI (I thought) and the lymph node pain was much worse and the old doctor's office couldn't see me for 10 days, so I went to a new doctor's office and saw a nurse practitioner. She put me on a new antibiotic, palpated enlarged lymph nodes everywhere and sent me to an oncologist and urologist. After the antibiotics I still feel awful so I went to the oncologist.

He's fairly certain I don't have lymphoma, he didn't palpate any enlarged lymph nodes, even the one that bothers me all the time. He felt strongly that something is indeed wrong, perhaps something in addition to or even instead of the fibromyalgia, but also that it should definitely be managed as part of my overall care. I showed him the letter from the old doctor's office, he would not move out of his home as he doesn't think this would be effective in eliminating anything. He thinks I should keep a journal of temperatures and try to find an infectious disease specialist. He also recommended a new doctor, since I was so unhappy with the old doctors office.

Today, I spoke with the new doctor's office. The urine culture from the most recent UTI was also negative. I went over there and filled out the paperwork for them to get my records from the old office. Now I'm really reconsidering the urologist. On one hand, I want to talk about my kidney's strange formation and the multiple ideas I've heard on it. I also want to know why I keep having UTI symptoms. My co-worker who also has fibromyalgia just went through a ton of testing for frequent UTI and found nothing at all. I definitely don't want to do that. I can't really afford that. I've already spent almost 1/3 of my income for 2010 on doctor's visits only to continue to feel worse.

It's going to take a month to get the old records to the new doctor, they don't call when your records arrive, just put them in your file. I'm torn between just waiting until those get there then starting over with the new office, and going back to the old office, because at least they know what we've done, and requesting some specific tests, like Vitamin D and magnesium. Or I could just take those and see what happens and forget about doctors overall... they're not really doing anything but taking my money at this point. Today, the oncologist told me, in a nice way, that if you're feeling unwell and gaining weight, most doctors aren't really going to do much anyway, as digestive problems cause weight loss when they're bad and weight gain causes all kinds of feelings of unwellness.

Since becoming ill again, I've gained almost 60 pounds :(

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 4/2/2010 8:07 PM (GMT -7)   
HTG -
I feel so bad for you!  You have been through Hades.  I'm not going to try to advise you on which way to go, because others here are more informed, and you will find lots of support here.  But I will say that finding the right doctor is SO important - it took me years, in which I was told: 1) there was nothing wrong with me because my tests were normal, 2) my friends probably had the same symptoms as I did but they didn't assume they were sick, 3) I was a bored housewife who should have my husband take me out for Mexican food to clear my sinuses so I could think more clearly! mad No, I'm not kidding!  It seems very strange that that doctor's office won't let you see your chart.  Surely that's illegal?  They're YOUR records! 
 
We are rooting for you.  Don't give up!     
Debbie
 
Diagnosed: Fibromyalgia, Meniere's, mild liver damage, keloid scar tissue (from burn) on back, arthritis, lumbar disc damage, IBS, migraine,
 
Meds: Nortriptyline, Clonazepam,  Effexor, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, calcium + vit. D, vit. C
 
Chiropractic adjustments


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 4/2/2010 9:33 PM (GMT -7)   
Hi HTG, Welcome to the family. I am so sorry that you are going through so much to
get all your medical issues resolved. It is frustrating not to be able to get answers.
You shouldn't have to wait a month to obtain your records, your health shouldn't be put
on hold until the doc's office gets their act together to send them to the new doc. Sorry,
I've been through this in the past and it angers me how some of the medical community
doesn't seem to care about patient needs. It has really changed how I deal with doctors.

First off when you get tests or lab work done, you should be able to get copies of
everything. I always request copies and keep a binder of all my results. I'm very pro-
active in my health care and in the past changed doctors when I felt I wasn't getting
adequate care. Bring a written list of questions to your appointments along with a list
of your symptoms. I will make my rheumy write things down for me. Your doctor should
take the time to go over test results with you.

You can also learn to understand the tests and results by going online, there are a couple
of good websites out there. You do have alot going on so hopefully a doctor will follow
through with doing rountine complete blood counts and comprehensive metabolic panels.
I wish you the very best and hope you can get the wonderful treatment you deserve.
Please keep us posted, come back to ask questions, comments or to vent. We care!

Hugs, Robin


Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 

Post Edited (crazykitty) : 4/2/2010 10:38:42 PM (GMT-6)


HTG
New Member


Date Joined Apr 2010
Total Posts : 17
   Posted 4/2/2010 10:13 PM (GMT -7)   
I know what SHOULD happen, but it has not happened... I can't make that happen at the old doctors office... my doctor left, the new people won't do what they should. I can't exactly fix that on my own. I'm just totally sunk now. I don't know what I'm going to do, I can't afford to repeat the CBC and metabolic panel that I have had done in 2010, I don't want to wait a month, but that's what's going to have to happen I guess.

In the mean time, my lymph nodes, which are fine, hurt like crazy :(

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 4/3/2010 4:35 AM (GMT -7)   
Hi, and welcome!  I agree with Robin.  You need to get a copy of  your medical records.  Those are YOUR records and you "own" them because you hired and paid your doctor for the tests to get these records.  I would call them and tell them you want a copy of your records and you will pick them up the next day.  I've never had a doctor not give me my records.  I even have the operative report from major surgery!
 
Once you have your records in hand, you won't have repeat testing on things.  That will help you. 
 
Your sore lymph nodes could possibly be tender points that are used to help diagnose fibromyalgia!  Be sure to check out Fibro 101...the second thread on the forum.  There are links to good information about fibro and there is a tender point chart in one of the links.  See if this is where you are hurting.  If so, find a good board certified Internist and call to make sure they treat fibromyalgia patients.  If it is fibro, they can help you.  If it isn't, they still can help you!  Board certified rheumatologists are good if you do have fibro but my Internist takes care of my fibro.
 
Also in the Fibro 101 thread, there are links to a journal and pain charts that help explain your pain.  You can print that out and record in the journal the pain you are feeling when doing certain activities.  This would help your doctors too.  There is a link to fibromyalgia symptoms there, too.  Many with fibro have UTI's and IBS.  But, your kidneys might be playing into this.  I'm only guessing because I'm not a doctor.  I'm just trying to use some logic here!
 
Meantime, don't hesitate to ask questions.  We are here to help you.  Please let us know what you find out because we really do care.
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 4/3/2010 5:39:20 AM (GMT-6)


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 4/3/2010 6:06 AM (GMT -7)   
Hi HTG and welcome. You really do need a good doc that will sort through all your problems and the test you have had done and try to figure out what is going on with you. I really hope you find such a doc soon. I would get copies of all the medical records and keep the journal til you find a doc and be firm about it when you do go to a doc. This is your body and you know something is wrong so don't let them make you feel a hypochondriac and keep sending you from one doc to another.
 
With fibro you can have tender spots anywhere on your body, I even have them all over my head.
 
Also keep track of how you feel when the weather is changing or you are under stress, these are two things that make fibro flare.
 
I really wish you luck.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


HTG
New Member


Date Joined Apr 2010
Total Posts : 17
   Posted 4/3/2010 8:53 AM (GMT -7)   
You can't just go an get your records. If you could, I'd have them. :(

I know about the tender points, these are not the defined tender points. I have some of those too, but these are in addition to those.

So it looks like I'm just stuck

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 4/3/2010 9:26 AM (GMT -7)   
I moved from another state a few years back and I was able to obtain all my medical
records by asking in person. I had to sit in and wait for them to be copied but was able to
get them. They can not deny you. You could call your new doctor and ask that they call
and have the records faxed over imediately. Something isn't right there!!!

I would be in their waiting room demanding my records. Good luck in obtaining what is
rightfully yours. I'm am sorry they are giving you such a difficult time.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40603
   Posted 4/3/2010 11:37 AM (GMT -7)   
I understand what you are saying about the medical records, it is like they are some big secret or something.

I know that this seems frustrating now, but it will come clear for you in the future. It just takes time, and having to change doctors doesn't make it any easier. It is like you get stuck in some maze or something. I hope that you get it all sorted out soon so you can get a diagnosis and treat what is going on.

It surely sounds like fibro is messing with you. And it seems to mock other things. It gets overwhelming when you are trying to get a dx. And everything gets magnified. We tend to worry too much about what is going on because of that. So try to relax. Being stressed only makes things worse. Take life one day at a time. This is the only way to go with fibromyalgia. In fact it was a blessing in disguise for me because I had a tendancy to worry too much. Now with the fibro, I can't. So that was like a weight lifted off of my shoulders.

I hope that you feel better soon. Keep posting and let us know what is going on.

Take care,

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/4/2010 2:48 PM (GMT -7)   
It's not always easy to get records. I saw one specialist for a few years and then my insurance changed. When I asked for my records, they told me they charged a "nominal fee." That fee turned out to be $25 for the first page and $2.00 for every other page after that They wouldn't tell me how many pages they would give me but my paper file was about an inch thick. Apparently, they have a right to charge a "nominal fee" for copies and there isn't much you can do about an excessive fee.

They eventually faxed everything to my PCP for free but it took almost 6 months. My PCP's office requested the records 5 times before they came always being told they needed some time to do it.

Different states have different rules. I could have spent days sitting in the office but without the fee, no records. I've had lab tests done and asked to have the results sent to me and my doc but the lab denied the request. They only send to docs. My PCP automatically sends me a copy of all labs so it's not a big issue.

If you frequently have symptoms of a UTI but clean cultures, you could have interstitial cystitis. Google it and ask your doc. I have friends with it and it took some of them years to get a proper diagnosis. If the symptoms fit, you might try some of the dietary changes to see if you get some relief while waiting for your appointment.

Good luck.

HTG
New Member


Date Joined Apr 2010
Total Posts : 17
   Posted 4/5/2010 4:28 PM (GMT -7)   
Thanks, I'm still wavering on going to the urologist. I'm not sure I can handle another illness diagnosed by excluding others. I looked at the diet, and I do eat a lot of few things I eat on the list, but with all my other dietary restrictions, not sure I'm ready to take on more.


I do understand that everyone eventually diagnosed with fibromyalgia goes through years of misdiagnosis, and doctors questioning if they're just crazy, but I've been there done that. I just don't understand why I'm having to go through it again!

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 4/6/2010 8:16 AM (GMT -7)   
Yeah, I hear ya. It's rough....
Debbie
 
Diagnosed: Fibromyalgia, Meniere's, mild liver damage, keloid scar tissue (from burn) on back, arthritis, lumbar disc damage, IBS, migraine,
 
Meds: Nortriptyline, Clonazepam,  Effexor, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, calcium + vit. D, vit. C
 
Chiropractic adjustments


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 4/6/2010 9:58 AM (GMT -7)   
Hi,

I randomly cam in here today and read your post. I too have fibro and I am sorry for all the problems you are having.

I am wondering if you have seen a rheumie and if so, have they tested you for Lupus or Sjogren's Syndrome. That could explain much of what is happening. And also you may want to see a nephrologist for your kidney stones, or try eliminating calcium containing foods or the ones that cause kidney stones.

I hope you get answers you need. I have been through that route too and it stinks.

leta
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 20 mg, prenatal tabs, potassium, vit D 50,000, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 50mgx3, motrin 600mgx3, famotadine, darvocet 100x2 prn, amitriptyline 25mg, maxalt, topamax 150mg, tigan


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 4/6/2010 10:54 AM (GMT -7)   
Just a thought here... Have you been screened for Lyme Disease? It mimics so many other diseases and also can cause fibro...
~ Jeannie
Moderator for Fibromyalgia and Diabetes

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