Do I really have Fibromyalgia? PLEASE HELP! I'M NEW HERE

Ok so for a while now I have been having a LOT of weird things going on with my body. There have been points I have felt "all screwed up"! The other night my husband, kids and I went out to eat with my parents at Cracker Barrel. While waiting to be called we looked around in the store section. I starting telling my mom of all the things that had been going on and she just gave me a look like she knew something. She then asked if she could try something. She pressed on a few spots on my arms. She felt around and I was like "Ouch that is sore!" She did the same to the other arm and it was sore in the same spot. She then immediatly mntioned Fibromyalgia. She was diagnosed with it quite a few years back and even had to get a hysterectomy because of it. I was like "no not me"... She then asked if she could try the same on my back. She pressed on a few spots and I was like "Nope Nothing"... All of a sudden she hit one spot and it felt like electricy running through my spine! It felt sort of like one of those prank shock pens! She said she has the same thing... I mean I really don't even know anything about Fibromyalgia! I have no clue if it's a disease or deadly or what. I mean I'm sure it's not deadly since my mom has never mentioned anything like that. But here is a list of the problems I've been having and had for a while:

(As of this moment I am having really intense stomach pain near my abdomen area - This is honestly what made me decide to post)

- I have REALLY bad headaches!! Well actually MIGRAINES! I have had them everyday almost constantly for over a week straight now. Before that I would have them at least twice a eek. They make me extremely sensitive to light and sound, dizzy, lots of pressure in my head, sick at my stomach, and really hurts my eyes! And I will just hae these odd sharp head pains out of nowhere.

-For a while now I have had pretty bad anxiety. It all started with my heart racing out of nowhere and for no reason. I noticed it happening more and more and more and it began to scare me so I started telling people. I was told by multiple people that it sounded like anxiety. I get really nervous even for nothing, very jumpy, makes me feel depressed and causes me to cry at random, makes me stress, and causes me to want to shut everyone out and be alone.

-I've been having a lot of soreness in my body. Mostly in my neck and back, but there are times I feel so sore like I had overly worked out the day before.

-My last period has lasted for nearly 2 weeks.

-I have odd random body pains all the time (just like right now - and I keep feeling like I'm being stabbed by needles in my lower stomach along with the constant cramping pain feeling)

- My memory is AWFUL!! I seem to never remember anything! I will be sitting on the couch and think of something I need to do. I immediatly will get up and TOTALLY forget why I even got up. I will even do this in the middle of conversations with people and always forget what I'm talking about. If I ever need to do anything, I have to immediatly write it down or I WILL forget!! I'm in my 20's... THIS SHOULD NOT BE HAPPENING!!

-My hands and feet seem to fall asleep quite often. My legs and arms do too, but not as much.

-I feel like I am constantly tired day and night. For the past few years I will sleep in until noon or later and wake up and feel still just as tired as I did when I got in the bed. I have found myself falling asleep at the table and just randomly during the day.

-I have also had more frequent urination... kinda reminds me of how it was when I was pregnant, but I am 100% NOT pregnant.

-Idk why, but I get these itches that feel like they are under the skin and cant be scratched away. Sometimes when I try to scratch them, I get this extreme pain from it. That usually only happens on my legs (but I have had it happen quiet a bit on my fanny as well)

-I get twitches all over.... Eyes, cheeks, lips, arms, legs, eyebrows, nose... Well pretty much everywhere. I get this in a least one spot a day.

-I get ringing in my ears every so often too. Usually in one ear, but sometimes in both to where it feels like I am deaf.

-Oh and my hearing is awful! Hasn't always been like that. I clean my ears regularly and should have no reason to have this. I find my self unable to concentrate on one conversation when there is someone else talking. Or if I am watching tv and my husband starts to talk to me I have to mute the tv to understand everything he says. I can be in crowded places without feeling like I'm going to have a panic attack because I can't concentrate. I can't even turn on the vent in the bathroom while I'm in there because I can't hear anything outside of the room.

 

Thats all the problems I have that I can think of right now. I feel like I have WAY too many problems for a normal person. Could this be Fibromyalgia or does it sound like something else? I thought most of it could have just been from anxiety, but I don't know any more.

 

Post Edited (jennahill) : 9/17/2012 1:27:19 AM (GMT-6)

Are your headaches hormonal? I had them every month and finally my S-I-L told me about using natural progesterone cream (Dr. John Lee's books are helpful on this). Check with your doctor, as it may interfere with some meds. The cream was a huge help with my headaches.

Hi Jenna, and welcome!  I'm so sorry you thought we were ignoring you but your first post was ths morning at 2:46 AM eastern daylight time in the US.  Most of us are sleeping.  Also, we are volunteers and aren't here all of the time.  We do the very best we can and you can see you are starting to get responses now that we are waking up!  LOL  Please, though, use paragraphs when writing.  It's very difficult to read a long post with no paragraphs and many won't bother to attempt it.  So it is to  your benefit to use paragraphs.

 

First of all, fibro is a syndrome.  It isn't listed as a disease because they don't know what causes it but learned doctors are learning all about it.  As fas a having a hysterectomy because of fibro....that's a new one for me.  Maybe your Mom misunderstood the doctor.  Fibro affects the muscles, tendons, and ligaments in the body and causes widespread pain.  They think this is a neurological problem so I sure don't know how fibro could have caused your Mom to have a hysterectomy.  Just my humble opinion.

 

The pressure points your Mom found are usually caused by muscle tightness and nerve endings.  There are things you can do to help yourself.  Stretching exercises help, walking, swimming or yoga helps.  If you keep moving, you will usually have less pain.  It keeps the muscles flexible. 

 

Do you have fibro?  Yes, you could have fibro but we are not doctors here.  What you need to do is find a good board certified doctor that treats fibro patients.  There are still doctors out there in the Dark Ages that don't believe it exists.  Ask before you make an appointment.  Many here use a rheumatologist as their fibro doctor.  They will run a myriad of tests to rule out other illnesses that have many of the same symptoms of fibro. Then a diagnosis is given. 

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You just might see yourself there.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

 

Sherrine

Welcome jennahill! Sounds like everybody gave you excellent advice. I hope you can get a proper diagnoses soon. Fibro can be tricky to diagnose sometimes. Fibro has so many similiar symptoms to other illness. This is why your Dr should run several test to rule out other things. The list of symptoms you gave us, does sound like fibro. We can't diagnose you, but we can support you during this.

I have been reading a book on fibro. It has open my eyes so much. As I am reading I would say to myself " I knew I wasn't crazy". Lol. I have learned so much from the book and from here. I didn't really get the best education on fibro from my Dr. It was here where I finally learned how to manage it. It feels so good to be mostly in control of the fibro now. The best thing I could tell you is learn your limitations if you have fibro. Once I realized mine, it really controlled the pain so much better. I learned how to say no for doing extra work.

I hope you learned a lot and I hope you don't have fibro.

You have been given some very good advice.

I would second the advice on magnesium as it is also used in the ATP energy cycle and may alleviate some of your fatigue.
Gabapentin was also mentioned and is often used off label for neuropathic pain which you may have. The FDA has approved Lyrica and Cymbalta for pain in fibromyalgia. Lyrica addresses neuropathic pain and is also approved for shingles and diabetic neuropathy. Cymbalta is an antidepressant, but when prescribed for pain it is at a much lower dosage than for depression. Some doctors may also add a muscle relaxant like cyclobenzoprine.

You won't experience miraculous changes with any supplement or drug, but they can help make things bearable. You can still have a good and happy life even with a chronic illness - that is up to you. Having support such as this group or your mother will also help.

Fibromyalgia is categorized under rheumatism or as a central pain disorder. It is not fatal. It is not psychological either and the cause is unknown which is actually the case with many diseases.

Some doctors use tender points to diagnose patients with 11 out of 18 being required. You can easily google a body chart which will show you where they are. Pressure must be on the exact spot and doctors apply 4kg of pressure. Your mother was doing a form of this.

The anxiety is most likely related to the changes you are are experiencing and is a very normal reaction to being sick. Although some therapists, like doctors, are still in the Dark Ages, there are good ones out there that can help you cope with these life changes. Ask before you go in to find out if they consider fibromyalgia medicalization or psychosomatic. If they do run don't walk to another one who can actually help you. Denying that you are sick never cured anyone of any organic disease.

The brain fog is also very common. A qEEG can help pin point abnormalities if you wish to be exact and if you ever get to the point where you are too disabled to work.

You do have symptoms that are not usually part of fibromyagia which means you should definitely see a specialist to sort out what is what and get an accurate diagnosis. People can have more than one disease at a time.

If at any point you develop post exertional malaise (PEM) which last 24-hours or longer that isn't relieved by rest and happens even doing small chores such as walking the dog or doing the dishes you probably should see a specialist who specifically specializes in myalgic encephalomyelitis, sometimes called chronic fatigue syndrome, if the PEM lasts longer than a month.

ME is a neurological disease that sometimes co-occurs with fibromyalgia and although some symptoms may be similar treatment such as exercise that works for fibromyalgia alone may cause relapses in patients who also have ME/CFS if they are not careful to keep their activity within their energy envelope. If at any time your symptoms get worse stop what you are doing and try again later.

Jennahill,

I completely empathize with everything that you are saying because as I was reading your post I kept nodding because I have all the same stuff. I am in my twenties too and it is so frustrating to be young but feel like you are 90 with the stiffness, the memory, and the hearing problems. Do you have fibro? Maybe, maybe not. I agree that you should get some testing done. I feel like fibro is the mutt of disorders because we have a little of this, a little of that, but it's all smashed together. I have an awful time hearing people in loud places like in a bar or concert. I can't hear what people are saying but others seem to do just fine with it so I feel like I have something wrong with me. I also have a really really hard time understanding people with thick accents. I was always curious if others with fibro had this same problem. It's like the accent distracts me or makes what they are saying all jumbled up. Hard to explain I guess. I'm sorry you are going through all of this but I think you came to the right place for support.

Wow! i found someone who shares almost all the same symptoms i have!

aside from the aches and pains i experience:

numbing or "feeling of my extremities falling asleep" especially feet.

ringing in ears.

bouts of (major fatigue)

body twitches all over, legs, arms eyes,etc.

headaches sometime ever now and then sometimes daily.

as well as whole host of other symptoms.

balance problems,gi problems also (anxiety) but ive struggled with that for years. Just a bunch of weird stuff.

I was freaked out too when this all started, and sometime i still get anxious about it even though my diagnosis has been confirmed by two specialists. Neurologist and Rheumatologist. thats why i come on these forums to see that im not alone in this and its comforting to see that im not the only one that suffers with this painful and annoying condition.

if not done already, see a specialist, he or she will order tests to confirm your diagnosis.

Ive heard stories from people off many different ages even young people in their twentys or youger!

Im only in my early 30s and im a male!!!

Hello, i know what you mean.

I have been very active and worked on my physical fittness for years.

weight lifting,running,hiking etc.

when my fibro came on, it also changed my life. i didnt excercise for months and found it difficult to do my daily routine things like

working or going to the store chores etc. also playing with my kids at the park wich i was always highly involved in.

over time i slowley started getting back into the swing of things.

i started excersizing again but not with the same intensitey.

i also now do alot of the things i used to but have learned to listen to my body and know when to rest and not overdue things.

ive learned to have a different perspective on excersise and its now about maintaining my health and using it as a tool towards managing my fibro.

i try to live as normal of a life as possible but have come to terms that somedays i just need to take it easy but when im feeling somewhat better, go for for it but listen to your body.

This is my second year with this, so you learn a lot along the way and life can still be pretty good.

 

Too young? I was in my mid 20's when my symptoms first started, I am 32 now.