Hi everyone. I've been reading some of your posts and I have a feeling that I may belong here. I'm hoping you'll read my long post and give me your opinions on my situation, and on where I should go from here with regard to medical care and proper diagnosis. This will be long, because I want to tell my story from start to finish so that you'll have all the information.
Let me first say that I have always been a healthy person. I'm currently 28 years old. I've had my share of colds and flu, always been predisposed to sinus infections and allergies, but no major illnesses or anything like that. I've always been somewhat overweight, but I exercise and eat fairly healthy. In the span of 4 years starting in fall of 2000, I moved out of state for school, got my masters degree, got pregnant and moved back home, got married, started a PhD program, quit when I realized I wouldn't have enough time for my family, got another job and started the day I found out I was pregnant again, had the second baby in July 2004, bought and moved into a new house three months later. I've obviously had a lot going on (but don't we all?). I'll go into more detail about everything from the birth of my first child now.
I had a c-section in September 2002. Normal, non-emergency, healthy baby girl (she was breech, hence the section). I delivered a healthy (at birth) baby boy by repeat c-section in July 2004, but during my last trimester I began experiencing upper right abdominal pain. I thought it was gallstones but an ultrasound revealed nothing wrong. The pain went undiagnosed. I nursed my son from birth, but at 2.5 weeks old he started having problems. I thought it was reflux but it turned out he had a protein sensitivity. It took a grueling and miserable 2.5 weeks to figure it out. At 5 weeks we started him on a hypoallergenic formula and that problem was solved. Shortly after we moved into our new house he got RSV. He didn't sleep well and was sick for months. He's finally well, but things were tough for a long time. I'd say he was well beginning in February this year.
That's when my problems started. In late January my mother in law noticed that I wasn't myself, I was more emotional that normal and it seemed like I couldn't kick this cold I had. I also couldn't tolerate exercise like I used to. Then in early February, there were three days where I was just totally depressed. My whole system felt like it was shutting down - fatigued, mentally depressed, brain fog, couldn't concentrate. I went to the doc and they gave me antidepressants, which helped. But the fatigue didn't go away, and I began to experience muscle and joint pain. After normal blood tests and feeling like my HMO didn't care that I wasn't getting better, I went to a hormone center and they gave me strong B vitamins. They really helped me feel normal again. In fact, I remember looking at myself in the mirror one day and actually seeing myself for the first time in quite a while.
This was until early May, when I began having distressing GI symtpoms - rectal bleeding, frequent bowel movements, lower abdominal and back cramping, etc. In the past few weeks, my right abdomen seems distended and the pain I experienced during my pregnancy is back. I had a normal colonoscopy two days ago, so colon cancer and IBD have been ruled out (internal hemorrhoids are the likely source of bleeding). My abdomen just below my navel and on the right side is extremely tender to the touch. I've noticed just within the past few days that my neck and underarms are also really tender. The fatigue is still with me and in fact has never gone away completely. I'm also having vision problems, and problems speaking, I'm hitting the curb while driving sometimes, and just in general I am not with it.
I'm now wondering if I developed adhesions after my first c-section, and they caused me pain during my second pregnancy. And perhaps I developed more after my second c-section, and they're causing me increased pain and bowel problems. I'm also thinking that everything I've been through in the past 4 years triggered fibromyalgia, because a lot of the symtpoms I'm having seem to be consistent with it.
I have a CT scan in a couple of weeks to see what's going on in my belly. I am really looking for support and advice, because no one really understands how I've been feeling for the past 6 months, and my doctors are very eager to blame stress for everything I've been feeling. The funny thing about that is that I feel that I've handled everything very well! Anyway, I'm not really sure what I'm asking you all. I guess I'm just hoping for some opinions on what I've been going through, and maybe some advice on what to do now. I really appreciate you reading my novel here, and thank you in advance for your responses.
Lyndru, Hi and let me say how sorry I am that you are going through all this.
I wish I had advice for you but I'm not good with the medical stuff but there are some ver knowledgabe ones here and I'm sure they will be able to help.
I only wanted to let you k now that I am listening and understand I myself have been looking for a diagnosis and help for the pas 6 yrs and may finally be getting some answer.
Just know you are not alone any more and I'm sure others here will be more informative.
Thinking of you and wish you the very best.
i will find a thread called the list and bring it foreward for you. print it out. fill it in and take it to your doctor.
you hang on. if we can help we will. teekers are you out there? she is the encyclopedia for us.
hello Lyndru, i totally understand how you feel. i am 29 with 2 young ones my self and can imagine what you are going through.
do you have emotional support from you husband and family?
have you talked to your doc about you possibly having fibromyalgia?
i know i went on with pain for about 3yrs before fibro was even mentioned to me.
its so hard to have something the matter with you and not know what it is and how to treat it.
hopefully the scan you will be having will give you and your docs some info to help you get some sort of relief from your symptoms.
keep us posted and just know that we are here for you through thick and thin.
there are so many wonderful people on here that have helped me out so many times when i have felt really down. i wouldn't know what i would do if i didn't have their support.
Thanks for the support ladies! These boards are really amazing. So is that list! My goodness. What was even more amazing than the list itself is the fact that after a quick scan I easily have 50% of the symptoms on it, or have had them within the past 6 months. I WILL print it out, fill it in, and take it to my doctor. Thanks bluelakelady.
I do have one question. My doctor is a bit of a nitwit, so I'm concerned that she won't take the necessary action if I do indeed have fibro. I had all the symptoms of colon cancer and she practically refused to refer me for a colonoscopy because I'm under 50 years old. Go to the colon cancer board and see how many of the folks there are under 50! I finally had to go out of network and pay out of pocket. Anyway, not having much experience with fibro, should I be prepared to ask for a referral to a rheumatologist?
Thanks again for your support. It really means a lot!
girl75, I do have support from my husband and family. My husband is incredibly supportive, and my family always helps out with the kids when needed. The hard part is that no matter how supportive and understanding they are, I don't LOOK sick, and I don't SOUND sick, so I think it's hard for them to really get how I feel. This is a sentiment I've read in a number of other posts on this board, and it just makes me sad. It's no wonder this fibro can be difficult to diagnose.
When you go to your docs have as much info as you can. I would first write down all the symptoms you feel, try to place them as to how often, all the time, ect...look up the National Fibromyalgia Foundation, they have everything you would need to get a handle on fibro and symtoms as well as diagrams. Also the list that Blue was so kind to provide will be very helpful in pinpointed what you are feeling.
hey Lyndru, i am so happy you have support from your family. i know what you mean about not looking or sounding sick. my husband understands how i feel only because he lives with me on a daily basis but i always find myself having to remind my family like my mom and my brothers. it gets a little old sometimes.
i feel good though when i come across people who know about fibro and understand how i feel.
have a great day.
Nice to meet you and I'm glad you felt comfortable enough to tell your story. I DID read it and found some interesting symtpoms you mentioned that shot up some red flags.
Now, please keep in mind, I can only share my experience with you and my own OPINIONS. K?
It seems to me that your problems started after your C-Sections, which in terms of "trauma" would be a qualifying event for FM. However, joint stiffness and inflammation are not usually symptoms of FM. FM is a connective tissue disorder of the musculalskelatal system.
I also wanted to add something about "The List". It IS overwhelming when you first look at it isn't it! But, please keep in mind that many of those symptoms cross over to other conditions. Myofacsial Pain Syndrome, sometimes know as Chronic Myofacsial Pain, Chronic Fatigue Syndrome, and even MS can carry some of those very symptoms. FM is a tricky condition to dx, but thank goodness more and more docs are going the extra mile to learn more about it.
Lyn, I just bumped up a bunch of old threads with a lot of "technical" info in them, take a peek at some of those. Particularily the one about Fibro being classified as a disease.
It's good that you recognized your depression and got help for that. Anti-D's are used to treat FM for other reasons. They are considered an "off label" medication treatment for FM because they are a Selective Serotonin Reuptake Inhibitor. According to docs, we Fibromights have no serotonin which is a natural chemical in our brains that produces endorphines. Endorphines (if you exercise you are probably familiar with endorphines) are the body's natural pain killer. Again refer back to the thread about FM being classified as a Disease. This thread explains how the ability to react "normally" to pain is affected because of FM. Also another good thread about how serotonin works and the controversial use of anti-depressants to "boost" serotonin is called: New "tidbits" of info for us Fibromites!
Yes, most likely your GP will refer you to a Rheumy. By medical standards a Rheumy gives the "official" dx of Fibromyalgia and will therefore begin treatment. Though some will turn you back over to your GP for treatment if your GP wants to treat you. Mine did not want to treat me because (his words) "FM is complex and needs a specialist".
The doc will test you for TENDER POINTS (refer to the thread about "The difference between Tender Points and Trigger Points). Although this test is not as much of an "indicator" for FM as it used to be, but most likely if you have FM you will have some tender points. The only sure fire way to test for FM is to test the spinal fluid for "SUBSTANCE P" which is found in most everyone, but is highly elevated in FM patients. Substance P is a direct "source" of what causes FM pain. The doc will run all the tests for OTHER conditions, simply to rule them out. Testing for RA, Lupus, Thyroid problems and inflammation rates in your blood. If all those come back negative, and your symptoms point to FM, then you will most likely recieve a dx of FM.
The "red flags" that popped up in your introduction were, "extreme fatigue" and "tender armpits and neck". The reason I say this is because Chronic Fatigue Syndrome carries this specific symptoms. Especially the tender armpits. Usually with CFS lymph nodes will become tender and or inflamed. I have CFS and my armpits are often sore. You will also notice other lymph nodes that become sore, like in your groin and such. The neck pain, is it muscle pain or does your neck creak and crack? It is common to have neck pain that is caused by inflammed TRIGGER POINTS, again read the thread that describes the difference between TENDER and TRIGGER POINTS. Inflamed trps are a common symptom of CMP or MPS. Though people with FM typically feel tenderness in their neck, upper shoulders and upper back area. I believe that is the most common area of pain that most of us with FM suffer from. CFS will carry with it EXTREME fatigue. Though it is very common to have fatigue with FM, especially during a flare. You also mentioned that you feel worse after exercising. Malaise is a symptom of CFS. Malaise simply means "after effects", i.e. feeling sick after exercising. Exercising is good for FM, and when you start exercising it will be very painful before it gets better, you just have to stay with it, which is difficult, but very important for FM. Most members here on the board who have began an exercise regimine have all said that they feel better once they stuck with it and got past the "wall". Unfortunately, a lot of us with FM have other conditions that prevent us from exercising regularily. I was like you, I exercised a lot when I was healthy. I was a long distance runner, bicyling long distance, weight lifting, walking and what not. No more though. I DO realize that I should exercise, but with the CFS, I exercise for 20 minutes one day and suffer for 3 days after. Water Areobics or some kind of Hydro Therapy is best, IMO, for FM.
Since you haven't determined that you do indeed have FM yet, it's hard to recommend therapy to you. I also wanted to comment on your blurred vision and motor skills. MS has these type of symptoms. Now this is not meant to scare you, there can be 100 other reasons for those type of symptoms. And dx'ing MS can sometimes take years.
It is very possible that you have scar tissue from your C-sections that is causing bowel problems. IBS is a symptom of FM, but can also be caused by other things. Have you gotten the results of your CT scan yet?
Also when you said that your son was "protien sensitive" from you nursing shot a red flag for me as well. Elevated protien in the blood can indicate CFS, and FM (I think). A simple blood test can show protien levels in your system. It's possible that you had elevated protiens which caused your baby to react adversely. Again, refer to the thread that discusses FM being classified as a DISEASE. It mentions various protiens that are "toxic" to our CNS.
Okay, I can't, of course say that you have FM, nor can I say that your symptoms point toward FM. IMO, your symptoms don't point toward FM, but I'm not a doctor. Yes, stiffness and fatigue are certainly symptoms. Not so much joint pain though. That's why it's important for you to get all the blood tests and see a specialist who can put together your symptoms, so you will know for sure if it is FM or something else. Obviously you are suffering and you need to find out why. And yes, the "But you look so GOOD" is typical. Look good on the outside, feel crappy on the inside! Oh, when you go to the doc, any doc, don't wear makeup. Let them see you `el natur`al. I used to put on a pretty face when I'd go see a doc, heck, it was and is the only socialization I get! and I would always hear "you look so pretty today". Well, I wised up to that. Now I go bare faced and in t-shirt and jeans. They should feel honored if I comb my hair! I figured I need to look as bad as I feel.
And we cannot, IMO, any of us underestimate the power of Anxiety. Stress and Anxiety can do awful things to our body. You said you are using anti-depressants? Well, there is a fairly new med out there developed specifically for depression AND anxiety. It's called Lexapro. I use it since I've been dx'd with major depression as well as GAD. It is also given for FM. It is an SSRI. There are many many SSRI's out there that Rhuemy's prescribe for FM. SSRI=SELECTIVE SERITONIN REUPTAKE INHIBITOR. According to medical research Elavil is one of the more effective SSRI's for FM and it's one of the "oldest" SSRI's given for FM. Though it is a toughy to come off of. That's the thing with Anti-D's, withdrawl when you change or come off can be nasty.
What I would suggest, Lyn, is see your GP. Tell him/her all your symptoms, ask about a referal to a Rheumy for a possible dx of FM. I did mention CFS. The thing with CFS is that it is nearly as controversial as FM. A lot of docs consider CFS as an autoimmune disease and believe an infectious disease doc should treat it, while others believe it is merely symptomatic of FM, while others believe it is a stand alone condition that is similar to FM and often triggered by FM. And yet, some docs think that by having FM you can go back and forth between CFS, FM and CMP. But CFS is classified by the CDC as a autoimmune disease and most docs have as difficult a time dxing CFS as they do FM.
I would also ask your doc about getting a possible MRI on your brain, simply because of your vision and motor skill problems. Sometimes you have to be pretty persisitant with docs who seem hesitant to order these tests. I will use bluelakelady's suggestion here and just tell them it would make you feel better if you had the test done, for peace of mind. It's your money.
What's good is that your colonoscopy came back clear. And YES, I believe you don't have to be 50 to get colon cancer.
Well, my dear, I hope all this fits in one post. A "slight" problem I have. Keep us posted as to what you find out and always know we are here for you.
"We must be the change we wish to see in the world"
Last edited by tkgoodspirit; 06-17-2005 at 10:51 PM.
Obviously you are suffering and you need to find out why. And yes, the "But you look so GOOD" is typical. Look good on the outside, feel crappy on the inside! Oh, when you go to the doc, any doc, don't wear makeup. Let them see you `el natur`al. I used to put on a pretty face when I'd go see a doc, heck, it was and is the only socialization I get! and I would always hear "you look so pretty today". Well, I wised up to that. Now I go bare faced and in t-shirt and jeans. They should feel honored if I comb my hair! I figured I need to look as bad as I feel.
I think we all can relate to that "you look much better", well thanks, I really worked on it today, I actually put makeup on.
I now go the the doctor and let my true, natural beauty come out, it can be scary but the doc gets the point. LOL
wanted to add that the pain under the belly and to the right is the same exact pain i was having , ended up having to have a lap surgery to remove adhesions. but it was a long and drawn out process (took 7 months till i had surgery). Went thru 8 specialists of all types and had dozens of tests plus two hospital stays due to severe pain, till i got one who would do an exploratory surgery (cause adhesions dont show up unless your bowel is obstructed). Well they found out that a part of something they called a little apron of fat that we have right under our belly buttons was attached (adhesed) to the right inside part of me. Everytime i moved, twisted, turned it would feel like a hot burning iron was in there. Eventually it got to where the pain was constant without any relief at all. They cut away the belly button "apron" and let it return to its natural position which is just hanging under your belly button freely. They also removed alot of adhesions but were not able to remove all of them. Also when you have lap surgery or any surgery youre going to get adhesions, even if its surgery to remove them, the possibility of them coming back is high. Just wanted to let you know my side of the "pain in the right" that was due to adhesions. Stay firm and dont let them shoo you away or dismiss it as simply stress. Will keep you in prayer hon.