Fibro symptoms? Also have infected lymph node...I hurt all over...need advice...doctor treats me like hypochondriac

[aharris77]

Hello everyone. I am 29, female. Had a painful armpit lump which doc said was fibrocystic breast changes. Pain got worse even after my period recently ended so I went to ER today. ER doc says it is an infected lymph node. Started me on Zithromax. I took two pills today and I am to take one each day for four days after.

That was earlier today. Since then, I feel even worse. I not only hurt under my armpit, but all over. My breasts and chest feel sore in different places. My lower back aches. I feel achy and sore all over my body.

I am scared that I have cancer, or some kind of dangerous lung infection, or kidney infection.

I even paged my doctor and he hasn't even called back. Because I am also being treated for Generalized Anxiety Disorder (with Celexa and Xanax), he treats me like a hypochondriac.

I am wondering if I have fibromyalgia. In a way, I hope I do because it is benign and could explain all my aches and pains.

I have been aching, hurting and crying all evening. I don't have any family to accompany me to the hospital or doctor and basically I feel loney, scared and sore all over. I have a bad habit of imagining the worst case scenario.

Could my bodily pain be fibromyalgia? Could it just be a side effect of the lymph node infection? Should I go back to the ER? I feel like everyone treats me like a hypochondriac and I dread the embarrassment but as I said I hurt all over.

Basically I don't know what my next step should be. I took two Advil (400 mg each) and .5 mg of Xanax and I am just waiting for relief so I can try to rest. I don't want to run out to the ER and waste hours there for nothing but I don't want to ignore something serious either.

My husband says there is "always something wrong with me." He is right, I always feel like there is. There is always some ache or discomfort it seems. And now this. I feel like no one cares. I am scared and I feel so alone.

Thanks,

Angela

[PlateletGal]

This is apparently the latest research as to what causes Fibro & CFS. Since my blood tests indicated that I have inflammation (caused by bacteria) and since I have herxing reactions to the antibiotics on the MP... there is no doubt that bacteria has overrun my immune system and its ability to cope.


"Recent research points toward a variety of triggers prevalent in these conditions.

1/ a chronic bacterial infection which has overrun your immune systems ability to cope. You can be infected through a variety of mediums. The Sympathetic and Parasympathetic nervous systems are compromised and damaged. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.

2/ a viral/ chemical exposure which entered your system causing brain and spinal cord lesions, simultaneously leaving the Sympathetic and Parasympathetic nervous systems in a state of chaos. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.

3/ a viral/ chemical exposure which entered your system causing a temporary brain injury to the area of the brain that deals with immune response."


source: Dr. Mark Shaw "What Causes Fibromyalgia and Chronic Fatigue Syndrome Part I"

[Curls]

Thanks for digging up the rule again.  It does sound like what I remember now that I see it.  I've been only posting g'vt and major organizations for the condition, so hopefully that would be okay.  Mostly just giving people keywords and names to use to google.  I'll be careful!  Dramatic reaction medhelp had to your posts...  On the ovarian cancer forum people post links all the time and they are helpful (I had a cyst last year).

There is definitely an immune component to this.  It's the unraveling of what to do about it that's a bear!  If the MP pans out for a number of people it will be a big clue.  

[soulcyster]

did your doctor do any bloodwork?

[PlateletGal]

Hi Curls,

I checked their rules again and found the rule (# 9) listed under "RULES FOR POSTING QUESTIONS AND COMMENTS IN FORUMS AND PUBLIC AREAS"


Posting links to other websites or individuals, without prior written permission from MedHelp.

I thought I would mention it, because after I did it.. my posts were deleted and I was temporarily banned. I had to contact MedHelp before I could post again. I had no clue what I had done wrong at the time. I did find out then, verbally anyway, that links to government websites are okay.

The trial at Stanford looks very promising so I'm doing the MP right now, but keeping my eyes wide open. Years ago before I had a diagnosis, I did see a lady who did acupuncture and homeopathy and I swear that she got me better... but not enough to be cured. Its funny now how I look at the "remedies" she gave me and all of them are for infections and to boost my immune system... kind of the same thing I'm doing now on the MP !

[Curls]

Since I haven't been caught yet, maybe I'll take a chance on the links...  I couldn't find the rules that I know I've seen before.  Like you said - I was relieved when I ran a high fever.  For the first few years I didn't, and it was one of my subtle pre-cfs symptoms that started a couple years before onset.

I hadn't heard anything about the Stanford trial - very very interesting.  I'd heard about and results of the oops, name escapes me right now, anti-viral that didn't really show many results.  I know it wasn't valganciclovir.  I'm thinking of amphilgen which technically isn't an anti-viral.  Never mind me.

Hopefully it's just the hexring that's showing up right now.  Even regaing guten can be great.

[PlateletGal]

Unless MedHelp changed their rules, they don't allow links other than government links or links that they have approved first. I know that they don't monitor every post but I got caught once... LOL !

I also wish that the MP site would post the results of their research study so far... that is one of my concerns. But I do check the site often and monitor the progress of the members.

That's too bad that you don't tolerate some antibiotics. I am happy to hear that you had a high fever with that cold because that is a sign that your immune system is still fighting. One thing about CFS is that when the disease is at its worse you may catch a cold and not have any cold symptoms. Your CFS symptoms will get worse but yet you won't have a fever and/or other cold symptoms such as coughing, sneezing, etc.

The Stanford trial was the trial where they used valganciclovir, an anti-viral drug often used in treating diseases caused by human herpes viruses. The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months. The first patient has now been off the drug for almost three years and has had no relapses !  One of the patients who participated on the study is the co-founder of PetsMart. I do have some concerns about this drugs affect on the immune system...  valganciclovir is a powerful medication. But I am waiting to see the results of Stanford's next research trial. I believe they are doing another one right now on at least a thousand people who have been diagnosed with CFS.

[Curls]

Thanks for the link (via PM).  The MP site is a bit tough to follow.  I don't show many of the immune symptoms so ideally I'd see what subset (or all) of cfs patients it helps so I could figure out my chances of success.  It does sound like it's heading the right way for you with the refreshing sleep day.  That's great.  Hopefully it's the slow miracle cure we've all been looking for...  

I haven't done anything with herxing results yet.  I've always wondered if I'd be able to tell what's dieoff and what's poor reaction to treatment.  (I feel awful on some anti-biotics and not on a couple others.  It's a true allergy type reaction though with throat closing up and threat to become anaphylatic.  Another reason why I won't try any of these protocols until results are in.  The anti-biotics are very difficult for me to take.)   I did let myself run 104 temp for three days as part of a cold a couple years ago rather than use asprin to bring it down, and I think it was a kickoff to improvements - I figured nothing could live well with that temp and might as well let my body kill whatever it felt like!  My blood viscosity must have been great though; only time I could bump into things and it didn't hurt.

What's the Stanford study?  I haven't followed the Guaifensein at all, I'm not even sure that's what the Florida presentation was on.  It was more than I could handle at the time it came out.  

Why do you say that links can't be posted?  I'd seen that personal data can't nor sales pitches.  The Ovarian cancer site posts links all the time, and no one's ever commented?

[PlateletGal]

Oops --- almost forgot to answer your other ?'s. No, I have never tried the Guaifenesin protocol. I do know a couple of people who have fibromyalgia who are on the protocol and they say that "it helps". I think at this point in my illness that I need the Marshall Protocol to deal with the infection & bacteria that is making me so ill. However, I am also closely watching that study at Stanford University. My Endocrinologist supports my decision... he was actually the one who recommended the Marshall Protocol for me. I think my only real concern about the MP is the stress that it would have on my body, due to the herxing response.

[PlateletGal]

Hi Curls,

Since we can't post links on this website, I'm going to PM you a link to Amy Proal's new website. I think you will find the information easy to read (much easier than the MP site.. lol!) and interesting. Amy has interviewed several Marshall Protocol patients, including Reenie, who has CFS & fibromyalgia. Amy has CFS and has been on the Marshall Protocol for a couple of years and as a result, is now able to work part-time.

Since I have begun the protocol, I noticed that I no longer have an intolerance to gluten and I also haven't needed a prescription for cortisone for my allergies. There was one day in June when I woke up feeling refreshed ! I honestly don't remember having a morning like that since I've had CFS. I know the protocol must be helping me because I take low dose antibiotics and feel worse as a result (herxing... due to the bacteria being killed). Unfortunately with many illnesses, the treatment is just as bad as the illness itself.  Right now I am taking a break from the protocol... something that many MP members need to do from time to time.

[Curls]

I spent a little time looking at the protocol  It's not something I'm going to try right now until I hear more results.  It seemed like an odd approach to offering it and trying it out on cfs patients, and it felt a little red-flaggy on the site.  However, it isn't a sales pitch of snake oil, so it's worth looking at.  I didn't see miracle cure stories, so I might not have looked long enough.  I think I'll wait until there's some way to know if there are viruses in the cells of particular CFS people before i go through all of it.  I don't show the immune symptoms as strongly as some other people, so it might not be the issue I'm dealing with.

My doctor had one patient ask for his help in doing it, but hadn't looked into it otherwise yet.  He was interested in having me let him know what I found if I researched it.  (He's now known me long enough to know how to interpret what I come up with.)    

It sounds amazing for the original illness, but I'm not sure if the cross over to cfs makes sense - I'd like proof medically rather than conjecture.  I find that since I'm doing better I'm less quick to try out other things (and mess up the gradual improvment process I'm experiencing.)

How are you doing on it?  Are you seeing improvements?  Do you think they'll last beyond being on the protocal?  Did you ever try the gafinsetin one that was presented at the Florida conference this year in Janauary?  What did you find when you researched the Marshall stuff (compared to the little time I spent)?    I'd love to hear what youre experiencing and what you saw when you researched it.

[Curls]

My doctor is a GP with a subspeciality in CFS.  He tends to use conventional, but with advice on and help patients use alternative ideas out there.  He tends to read up on and keep track of the various research on CFS that comes out.  Hence if he's not keen on Nicoloson's work, I tend to trust him.  When Nicoloson first started doing stuff, he was excited about it, but then later he was disappointed.  I haven't seen him try to push aside any new ideas, and I've seen him explore a number of them (time permitting is the big limit).  For me the big avantage is that he can tell me other peoples results collectively at trying out the different new approaches.  I tend to think, there's a gap in CFS where some stuff works wonders for a small percentage and is not helpful otherwise.  It shows up as useless in research and gets discarded, even though it's the fix for a small number.  That's when it's helpful to have a doctor to sort out if it's worth trying for you in particular.

[carinya]

it sounds to me as though you may benefit from looking for a new Dr.. See if you can find someone who specialises in fibromyalgia. You don't say where you live, but you could try a search engine to see who is available in your area. Two books I have found helpful are "Fibromyalgia Up Close and Personal" by Mark Pellegrino, M.D. and "The Guaifenesin Guide" by Gregory K. Penniston, D.C. They are both in my local library, so try at your library to save money. The second book is a condensed version of "The Guaifenesin Protocol", a theory about and treatment program for fibromyalgia that I am in the process of trying. I have had fibromyalgia for over 30 years--since before it had a name--and have also in the past been considered a hypochondriac. The reason it seems as though there is always something wrong with you is that there IS always something wrong with you if you have fibro. I agree with the person who said to try to have your lymph node biopsied---that would rule out one concern and give you peace of mind. The thing that will make you feel best, however, is to try to take control of your own situation---research your questions on line. Sift through what you find and see what makes sense to you. Also, check with your local hospital or Dr. to see whether there is a fibromyalgia support group in your area. There is one in my area, and although I do not go to it, it would be a good way for you to not feel so alone. Often, you can find fibromyalgia listed under the Arthritis heading, as it is considered by some to be an autoimmune disorder similar to rheumatoid arthritis. Good luck!!!

[ch/gh]

You have come to the right place there are a lot of caring of people here and if you have other doctors to choose from I would seek a better doctor one that is caring and has a good bedside manner. A good doctor makes a world of difference. keep us posted:)

[PlateletGal]

"I beleive doctors only listen to drug companies and the CDC which is why many disregard Lo's and nicolson's research"

I agree with you and to be honest with you, I don't think most physicians' even read or care about all of the research on CFS that is available out there.

[PlateletGal]

Have you checked out the Marshall Protocol website and/or heard about it ?

[Curls]

My doctor's response on Nicolson's work is that it looked promising - until it didn't pan out in research.  There's no doubt that a subset of CFS patients have something that will respond well to antibiotics (including lyme), but it hasn't worked as an overall treatment plan.  It's all worth keeping an eye on, but it's not proven to be the miracle cure for the majority of people yet at this point in time.

The newest research on Gulf War Syndrome is fascinating.  The soldier's who got sick might well have been exposed - but also had a genetic predisposition to it.  I can't remember the researcher's name who published it.

[denise67]

First you need to have your family doctor send you to a patholigist to have a biopsy on the lump.  That can rule out any cancer..I lymph node usually appears when you are fighting an infection. But i have one on my neck that hurts like hell every day and they said nothing was wrong with me after my biopsy.. So i just take a xanax and I'm going to a nerve doctor next month.. Just to find out why the lymph node is still there.. Try putting an ice pack under your arm and see if that helps..but get a biopsy first...

denise67

[roseberryjean]

try taking a combation of like one tylenol and one asprin or 2 aleve, with moist heat and sometimes i use combation of creams like asprin crean and hydrocortisone and it seems to work. let me know your results

[Curls]

It might be helpful to see a therapist/counselor for a little while.  If your symptoms are physical (and some definitely are) she/he can help you sort them out without calling you a hypochondriac every time you start to speak.  And if any of your feelings and reactions are anxiety or emotion based,  he/she can help sort those out.  Once you have your thoughts and feelings sorted and a deep breath and some strength inside it might be easier to confront doctors, make decisions, and seek out new help as well.  Just be careful.  A therapist who wanted to revel in how physically sick you are, or the opposite, wants to make everything into an emotional problem isn't helpful.  Each session should make you feel stronger and clearer, and if they don't, find a different therapist (there are plenty of poor ones out there).  One of the symptoms of CFS (and I assume FM) can be what appears to be anxiety attacks, or emotional "liablity".  The hormone and autonomic systems aren't working correctly and these can be the result.

Instead of feeling better the zithromax is making you feel worse?  Is it the ziro?  If it is, maybe you are allergic/reactive to it.  This doesn't sound like one of the serious things you mentioned - no very high temperatures, etc..  I wouldn't go to the ER unless it was an obvious emergency, and I'd call my doctor and wait for them to call back.  It can take a whole day.  If you go to the ER alot and call after hours a lot, your doctor will start to take you less seriously.  It's important to handle as much as possible of any issues, during the office hours and set up a repoire.  It can also be helpful to ask a doctor when to call them after hours and when to go to the ER - they might have some good ideas.  They will then also be more open to you calling them, and them telling you if it's an ER problem or not.
Good luck!

[Grailhunter]

Its preaty normal when you feel terrible and can't find out why or what to do about it to imagine the worst.  The vast majority of the time, its not a life threatening problem.  Worrying when you don't know why is not hypocondria in my opinion.  Its called being human.  Fibro is a catch diagnoses.  There are definit symptoms, a wealth of symptoms.  Have enough of those symptoms and they call it Fibromyalgia and treat the symptoms.  If you don't have quite enough of the symptoms to get the Fibro diagnoses, it frequently gets diagnosed as a mental health issue and your Doctor, unless he/she happens to be a very kind person is going to keep shuffleing you off to the mental health side of things, and they will treat the symptoms.

Don't let the Hypochondria thing get to you and your not alone.  Hypochondria is a catch diagnoses that does not really exist to begin with.  Just do your best.  If your best is you can go from the bed to the couch, then do that.  If you can go out that door and do something positive, do that.  Know your limitations of what is good and bad for you and learn when to do them and your health and well being will probably hugely improve.  

[patsy10]

It does  sound like you are very anxious.  I know you are scared but a swollen, sore lymph node is not a reason to go to the ER or page your doctor.  ER is for serious, life-threatening emergencies or injuries. If you go you end up sitting there for hours on end for nothing and they treat you badly anyway.  Then you end up with a big bill.  You may or may not have fibro.  Your symptoms sound like fibro.  The lymph node will probably feel better in a few days.