Need help! Looking for answers/advice

[sampmoore]

Hello there!

Thank you for taking the time to read into this thread. I am an 18 year old girl looking for any type of help or advice. I've been struggling with symptoms of something that so far I have not gotten any answers for. I do not know if I have fibromyalgia, but I have done a little research and I do not know enough if it is a possibility. I wanted to put myself out there to have someone try to point me in the right direction.

When this first all started I had some lower back pain that I thought was a kidney infection, so I went and got it checked out and that wasn’t it. Then I had bad abdominal pain to the point where I couldn’t get out of bed and walk and sit to pee. It wasn’t appendicitis, and I thought maybe I had ovarian cysts or endometriosis My original doctor thought it was all in my head because I had a fear of dying in my sleep from my appendix rupturing. Eventually he told me to stop going to him so I went to someone else. I’ve had pelvic exams and ultrasounds and they all came back clear. One time it was so bad I went to the ER because I couldn’t bend over to put my jeans on in the morning. I changed birth control prescriptions a couple times and it kind of helped. I had a very nice gynecologist that listened to me and wanted to do everything to help me, but she wasn’t a surgeon, so to get checked for endometriosis I had to meet with someone else. He said he didn’t think the symptoms were consistent enough so he didn’t want to do an exploratory surgery. So I was back to where I started. My abdomen hasn’t been so bad lately, but I can’t tell if it has gotten better with the birth control or if I’m just so tolerant of the pain now.

The new pain I’ve been experiencing is mostly in my back, more specifically my shoulders. At first, it really scared me because I thought I was having chest pains. I saw a new doctor and she thought it was positional, so she told me to work on my core and wear a back support brace. She took x-rays of my back and found nothing unusual- except for my bad posture. I’ve been taking Naproxen and I can’t say that it helps tremendously. I just went back yesterday to her for a follow-up. I told her I thought my pain was more superficial than my spine, because my back is so tender to the touch. I can’t sit in a chair without my back hurting because it is being pressed against the back of the chair. My arms are always sore and I get jolts of pain that run through my elbow and I can feel it in the very tips of my fingers. My legs always feel like they are too tired to move and they weight 1000 pounds. I’m tired all the time, no matter how much sleep I get. I can’t sleep completely through the night. I sleep in like two-hour intervals. She took some blood to test my inflammatory rate and she talked about referring me to a Rheumatologist. This is more than just bad posture. So the doctor asked me if I had anxiety and I said sometimes I get worried about little things. (But everyone gets a little anxious sometimes, right?) And she was very quick to prescribe me anti-anxiety medication. I was shocked. I probably won’t take the medicine, it intimidates me. It was like she was so quick to give it to me because she thought I wanted at least something. But I don’t want a magic medicine, I just want answers. I feel like the doctors i’ve seen do not want to listen to me.

I think my problem is that my symptoms are too vague, but how else am I suppose to say them? I can’t remember the last time I’ve felt normal or comfortable. I’ve always been in some type of pain, whether it is a little or a lot. I feel very helpless and I don’t know what to do. I am very close to giving up because I don’t think any doctor wants to listen to me. I turned 18 this fall so I have to start taking matters into my own hands since everything medical is all confidential. My mom has been working very hard to help me with all this and we both don’t know what to do anymore. I’m trying to talk to as many people as I can to get their opinions and see how they can help me. So, please, anything you have to say to me please tell me because I’ll appreciate the smallest amount of help or advice. Or even if you know anyone that can help me, let me talk to them. Any blogs, or forums, or people that I can talk to that can I help me it will be greatly appreciated.

Thank you so much

Paige

 

[tracy45]

Hi Sampmoore, sorry to hear you are having so much pain. My suggestion is to take that referral and go see a Rheumatologist. He will be the one to help you figure out if it is fibromyalgia or something else. It could be fibromyalgia AND something else, which is common, so you need a definite diagnosis and then go from there. I have fibromyalgia and osteoarthritis and treat them differently. Get that referral asap. Good Luck and hope you find relief soon.

 

[1sweed]

Sampmoore,
You sound so much like me in my younger days. When our bodies do not behave the way they should it does cause lots of anxiety. And anxiety can cause tight stiff muscles and anxiety. I used to get upset with doctors that said it was just anxiety, because like you I knew there was something else going on that the doctors could not see or find with standerd tests. It was acually painful to hear that word and I wanted to escape from it, but in truth be your illness fibro, or something else, anxiety is a part of living with a illness that has no name.

I would like to suggest that you ask your doctor to refer you to a Rheumatologist to see if fibro or some other bone or muscle, or even lupus is the answer, Also try taking the anti-anxiety medication because in the long run it will calm your nerves and help relax your sore muscles, so that you can relax and enjoy life. Also if you read around the forum you will find many posts where we all talk about ways to relax. For fibro causes lots of anxiety with its wide array of symptoms.

Be sure to take the time to relax and slow down and pace yourself. Everything does not need to be done in one day. Most of us here were multi-taskers and we got things done. But if you continue trying to do it all and even doing hard heavy work, your illness will progress faster. So here are a few things to do to calm your nerves. Take bubble baths or warm water with epson salts to relieve muscle aches, read good books that are hard to put down, watch funny movies and laugh lots, take slow nature walks, go visit a elderly relative or neighbor and take the focus of your mind off you and help someone else for a short time. Do crafts or painting. Things do not have to turn out perfect, just have fun.

I hope you will read the different topic sections and please post some more anywhere you like. Check out pain management and feel free to visit the moan and groan section. I am glad you found us and I hope you will come back often to learn more about illness management and to make some new friends.

 

[Trellum]

Sampmoore, sorry to hear you are going tru this and can't find clear answers. I suffered from similar symptoms when I was younger... strange and unexplained pains that seemed to come from nowhere! It wasn't until some years I was diagnosed. It took me a long time tho, a lot doctors told me it was all in my head... a very rude one even told me I had the medical record of a 76 years old woman! LOL. Right, like I love going to the doctor and getting odd symptoms!

I just wanted to write this to let you know that you are not alone. Don't lose hope, I really think you haven't found the right doctor yet. That's quite common, since most doctors nowadays don't even care about the patient anymore. I know because I've seen plenty of them! Just be patient and keep looking. Once you get to meet the right doctor you will know it.

I hope you get your answers soon, best of luck!

 

[sampmoore]

Thanks so much for your replies and support.

My next follow up appointment is in 6 weeks. Soon I should hear back about that blood test. Last September I was tested for several autoimmune diseases, and they all came back negative. Unfortunately LabCorp doesn't seem to keep records for more than a year so I cannot show them to my new doctor, which is lame because it isn't cheap to have the tests done again! Also I'm suppose to take the Naproxen more regularly instead of taking it when I need it.

As for the anti-anxiety medication, I have no idea what to expect. I've never taken anything like that before. I also don't know what it is called because I haven't had the chance to pick it up yet. Is there anything to worry about? What can I expect if I take it?

If I go to see the rheumatologist, what questions should I ask him? What are some "key" things I can tell him about my symptoms that would better help him find a diagnoses?

Also, what is the pressure point test? I can't find a lot that is more in depth in explaining it.

 

[Trellum]

Hi Sampmoore! Glad you found our replies useful! As for your questions... the only advice I can give you is to get ready beforehand. Just make a list with all the symptoms you are experiencing. You should know which ones are the most relevant to be brought up when you see the rheumatologist. If he is a good rheumatologist, you will now need to explain too much. I hope you get to see a good one who actually listens!

 

[Trellum]

Hi Sampmoore!

It really depends on the medication you will be taking for your anxiety. There are some anxiety medications that come with certain side effects, some are as common as weight gain (many of them do), others might actually cause a lack of appetite. So we really need to know the name of the medication you will be taking

We can't tell you what questions you should be asking or the key things you should tell him, since you know your case better. I'd advice you to make a list with all the symptoms you have. Once that is done you can pick which ones are the most pertinent ones. It shouldn't be so hard to get the right diagnosis, specially if the rheumatologist you are seeing is a good one.

 

[1sweed]

Another thing you can do is ask the doctor who ordered the tests done, be it bloodwork or any other test for copies of the reports. Build your own notebook of any doctor reports and test reports, that way someone always has a record of your tests and exams, and reports. This means if LabCorp does not have your record then the doctor who ordered the test does and all you need to do is call the office and ask for it.

Sometimes we think it is easier to just let the doctors handle everything, but when you see any new doctor and they want your records, you will be able to supply them with what they need if your primary care doctor does not have the full reports. Hope that makes sense to you.

 

[sampmoore]

So I've noticed something interesting.

Since Dec. 19 I've been on Christmas break and I haven't had any school work to do at all and I've been getting lots of rest and sleeping in everyday.

About four days ago I stopped taking the Naproxen because I was going to a neighborhood Christmas party and I'm thinking what the heck its the holidays I'll have a glass of wine and I didn't want all that medicine in my system.

Well, I didn't get my glass of wine but I haven't experienced any back pain even while off the Naproxen (over the past 4 days).

What could this mean? Could the pain be caused by stress from school? Could it be because I'm sleeping more? Or did I just have a bad flare up and now it's calmed down a bit?

 

[1sweed]

It could very well mean all of the above. As I mentioned before stress and anxiety, can really mess you up and cause muscle aches and pains and even shaking or trembling. And the extra sleep your getting is a big help. Being away from school and all that stress is helping your body to relax.
As I said and others too try all you can to take time out of each day to relax and it will make you feel like a new person.

This is not to say that fibro is not a part of it, but even fibro can improve when we take better care of ourselves. A little pampering is always a good thing for everyone ill or not. Just try and pace yourself and I hope you continue to feel good. Let us know how your doing. If I were you I would still go to the doctor appointment and get checked out in case this was a part of a fibro flare.

 

[sampmoore]

I just shot open awake at 5am with sharp pains all over my back and the bottom of my ribs. I'm kind of pannicked and don't know what to do? What is this? I feel like I am on fire and that I'm being stabbed all over.