I think I have fibromyalgia?

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dodgingflames
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/5/2010 8:07 PM (GMT -7)   
Sorry if this isn't the place for this. I'd just really like to ask people who truly have the condition whether my symptoms are similar or if I'm just...wrong?

I went through the list of symptoms and of the 59 listed, I have 26 at least. There's another 8 I'm unsure of because I don't know what they entail or what they are. I also read the similar conditions thread and none of them really sounded like what I was experiencing(though I do have depression)

Obviously the main symptom is chronic, widespread pain. I have had pain in multiple areas of my body for a long time...At least since I was 18. I'm only 20 now and some days it's like I can't even be a young adult anymore. The main areas affected are my shoulders, neck, upper back, lower back, and knees. I feel like they are swollen and any pressure applied to them, such as with a massage, can be painful at different times though sometimes it feels good too. It's definitely a deep aching pain in the muscles, sometimes like they are on fire.

I really would just like advice about where to start with this. It was more mild pain with occasional really bad days, but I am pregnant now and since I got pregnant there are more bad days than 'good' ones. It's to the point where I honestly don't enjoy much about being pregnant and that bothers me.

Thanks for reading and any advice you have to offer!

Here's a list of the symptoms. I had no idea some of these issues were related to this at all until I read the symptom list.
1. PAIN
2. FATIGUE
3. SLEEP DISTURBANCE
5. DEPRESSION
6. ANXIETY
7. PERSONALITY CHANGES
8. MOOD SWINGS
9. SUBJECTIVE SWELLING OF EXTREMITIES
10. HEADACHES
11. COGNITIVE FUNCTION PROBLEMS
12. FREQUENT UNUSUAL NIGHTMARES
13. DYSTONIA
14. FREQUENTLY SAYING WRONG WORDS
16. LIGHT HEADEDNESS
17. MORNING STIFFNESS
21. DISEQUILIBRIUM
24. PHOTOPHOBIA
27. DECREASED PAINFUL SOUND THRESHOLD
30. CHANGES IN VISUAL ACUITY
41. NIGHT SWEATS
44. BREATHING DIFFICULTIES
47. SEVERE PREMENSTRUAL SYNDROME
49. MUSCLE SPASM
50. NON-CARDIAC CHEST PAIN
53. DRY EYES AND MOUTH
59. PLANTAR ARCH-or heel pain

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/5/2010 8:32 PM (GMT -7)   
dodgingflames,
I am so sorry to here what you are going through especially with being pregnant. I am a mother to 6(only gave birth to 5) and that alone is so difficult, but a blessing just the same. What you have described does sound a lot like Fibro. Have you had any joint pain? Have you had any swelling or redness near your joints. Is the pain on both sides or limitted to one or jumps all over the place? Sorry but there are really many more things than maybe you realize that can cause these issues. I noticed with my Fibro. that my pain was better when I was prego's. That is the nature of the beast though, it can be different for every person. I think you need to ask your obgyn to refer you to a good Rhuemy. Make sure it is someone that they know of or have heard of being caring and compassionate. As many will tell you, a lot of us have had awfull luck when it comes to our first dozen Dr.'s. There are still a lot of Dr.'s that don't take Fibro as seriously as they should. Or I might say the sufferers. I wish you a lot of luck. You have came to a great forum. I am so sad if this is what you have. No one should have to go through this, but a BIG Welcome to you. Congradulations on the baby!! yeah Gentle Hugs Heather
Mama6

dodgingflames
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/5/2010 8:46 PM (GMT -7)   
I don't really have joint pain I don't think. It's more muscular. Though the knee pain sometimes feels like joint pain. I know it occasionally feels better to stand when my knees hurt, though standing for too long is difficult in itself. The pain is on both sides, though it can be worse on one side than another. It can move but it's almost always present in my neck and shoulders. There isn't any swelling or redness in my joints either that I've noticed.

I'm on Medicaid for the pregnancy and don't know if that covers rheumatologists? I don't know anything about them honestly, certainly not where to start looking for one :( My OB doesn't really think the pain is unrelated from the pregnancy. If Iention it he mostly just tells me I haven't felt anything yet(referring to labor) so I don't know if he would refer me to a specialist about it.

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/5/2010 8:51 PM (GMT -7)   
Welcome DodgingFlames. :) You sure have come to the right place - and your question is exactly the sort you should be asking. We're an easy going, supportive group - so relax, you're among friends.

I'm sorry you may have this condition. Have you talked with your doctor about this?

Congratulations on your pregnancy, by the way. :)

One thing that I noticed, you said some areas of pain "feel" swollen. Are they actually swollen, or they just feel painful? Although that particular list notes swelling, I don't believe that is actually a symptom of fibromyalgia.

These symptom page might also help you:


http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_symptoms


www.fibromyalgia-symptoms.org/fibromyalgia_treatment.html

I'll leave it at this for now - the others will be along tonight and tomorrow morning with a lot more info for you. For now, just hold on. You're in the right place.
*hugs*
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

dodgingflames
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/5/2010 9:17 PM (GMT -7)   
It just feels that way. Like it feels how my feet do when they swell from being on them for too long, but there's nothing noticeably different about them.

I do hope that I'm wrong really and it will all just go away. But it would also be nice to have an explanation. Thank you so much for your advice and kindness and not just making me feel stupid(some people do that for some reason)

I haven't been able to see my regular doctor since pregnancy though I do feel he would take me more seriously. However he doesn't take Medicaid and my mom removed me from her insurance. So for now I'm stuck with just my OB even though I'd rather see my normal doctor :( I trust him more.

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/5/2010 9:44 PM (GMT -7)   
Hi again. :)

I guess we cross posted earlier. Nobody here will say things to make you feel stupid. I promise. The whole lot of us have gone through hard times getting people to take us seriously - we know what it is like - and we wouldn't do that to anyone else.

You've been experiencing pain since you were 18 at least - and you're now 20 - but your OB brushes you off. Hmmm. I can see why you don't totally trust him.

Granted, your former doc may not accept medicaid, but, have you considered calling your former doc's office, or writing him a personal letter, to explain your situation? ( That you can not see him due to medicaid coverage, and that you're concerned about your symptoms possibly being fibromyalgia - and that you'd appreciate it if he might name a few doctors who he knows are good - who do take medicaid.) Docs always know other docs. If he was one you liked, chances are his colleagues might also be trustworthy. And, he probably knows some who accept medicaid.

Since it isn't actual swelling, that rules out some other illnesses. That's good info to have as you try to figure this out.

I'm on pretty late at night - but I think I might be the night-owl of the group. When the others get up tomorrow - they'll have more ideas for you. Don't worry. :)
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

dodgingflames
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/5/2010 10:06 PM (GMT -7)   
I'm always up late haha. I say it's because I like to be awake while my boyfriend is home even if he's sleeping, so I have backwards days and nights :x

I never even considered writing him a letter or anything. That certainly wouldn't be too difficult. And he is the one who diagnosed my depression and he actually paid attention to my concerns about that. My OB has not once mentioned my mental health despite me telling him I went off anti-depressants when I got pregnant. But he is the best OB in my city so it limits my options. I don't want to see someone who pays even less attention.

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/5/2010 10:16 PM (GMT -7)   
That's cute about your boyfriend. :)

It definitely can't hurt to ask. That way you could keep your OB for strictly pregnancy issues, but have another doc for your other concerns. One way or another, it will be good to find a replacement for your g.p., or even a rheumatologist if need be. You need more support than you have at the moment with everything that's going on.

Time for me to get some sleep. I'm sure I'll see you here tomorrow. :)
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

MinnyMouse
Regular Member


Date Joined Jun 2010
Total Posts : 197
   Posted 8/6/2010 12:54 AM (GMT -7)   
Hello dodgingflames - Welcome to the fibro boards... Whether it truly is Fibro or another condition, you have come to the right place for support. Everyone in the group understands the pain and frustration of what you are going through and the difficulty in getting a diagnosis. Princess (i think) said it right. Do what you have to do to find a fibro-friendly Rheumy. You can sometimes research the web in you area and find patient ratings and comments that can help with determination of good/evil.lol Just keep looking until you find the one that will take your insurance and remember when you get there that YOU hired HIM and get your questions answered and your fears calmed. I'm getting ready to move across state and after having finally found the Rheumy of my dreams I get to start all over again. It's not easy. But finding a great doc can be done. All of our symptoms are different and they can change on a dime. I do have what feels like swelling - but you can't always see it in all my joints. My pain is widespread, in the muscle tissue and I have bone crushing pain in my legs that makes walking to difficult to do much of the time. Just as I think I have it on a level ground, something else pops up.

You are in the right place , no question is a dumb one, on the other hand not asking won't help you understand the condition and might lead you down the wrong path or delay the ability to get some relief.

Congrats on the pregnancy's.... My cousin delivered twins last night... My babies are grown and out of the house.

Welcome again. Take care
[u>Diagnosis: ]

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Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/6/2010 7:20 AM (GMT -7)   
HI, dodgingflames, and welcome!  I'm so glad you found us and joined in.  Yes, you do seem to have a lot of what we suffer with but we are not doctors so you really do need to be checked out.  I use a board certified Internist but many here use a rheumatologist for their fibromyalgia.  Be sure that whatever doctor you are considering does treat fibromyalgia because there are still doctors out there that think this is all in  your head.
 
Now for your gynocologist.  He sounds like an insensitive jerk!  He is not walking in your shoes.  He is not feeling your pain.  You should not be having pain caused by a pregnancy.  Yes, you will have labor pains but you are not in labor yet so he needs to shut his mouth!  Phew!  
 
Want to know why I'm angry about the way you are being treated by your gyno?  Well, I was pregnant, started getting bad abdominal pains and put 7 pounds on in one month but I was watching what I was eating.  When I went to see my "jerk" he told me he knew why I was having problems and then he started rattling off, in a sing-song manner, peanuts, popcorn, potato chips, ice cream.....etc.  I burst into tears and he threw a box of tissues at me and asked what I was crying about.  I told him I hated doctors that told me what I ate when I didn't eat it.
 
After several weeks, and pain that I nearly passed out from, I had exploratory surgery when I was five months pregnant.  I had an ovarian cyst that was 10 inches in diameter and weighed 4 pounds that was all twisted around my ovary and fallopian tube and was turning gangrenous and was ready to rupture.  That would have killed me and my baby.  So, I have absolutely no patience with doctors like that.  (By the way, the jerk came in my hospital room after my surgery and said "Wow, you really were sick".  Yeah, right, you idiot!
 
Have you checked out Fibro 101...the first thread on the forum?  There is a lot of good information about fibromyalgia and you will learn a lot.  You already listed many symptoms so you could very well have fibro but you need to have tests run to rule out other illnesses that have the same symptoms.  In Fibro 101 there is a link called What Else Could It Be.  You will see what illnesses they want to rule out first.  
 
I wish  you luck on your journey.  Don't hesitate to ask questions because we are here to help you.  I'm happy you are here and I hope to hear more from  you soon.
 
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

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/6/2010 8:57 AM (GMT -7)   
Hello and a big congrats for baby on the way! Hoping you find a good doc who will be
attentive to your needs and provide plenty of support. Once you find a doc that is caring
and knowledgeable, you'll be on the path of getting your needs met. Wishing you the
best! We are here for eachother so be sure to come back and let us know how you are
doing, 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) : 8/6/2010 10:08:52 AM (GMT-6)


dodgingflames
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/6/2010 9:06 AM (GMT -7)   
Thank you Minny and Sherrine :)

I know you aren't doctors but you do know the condition. It seemed like a good place to start :) and I think I made a good decision in coming here. I did read the Fibro 101 thread, which is where I saw the list of symptoms I mentioned.

I looked at the thread of What Else and I honestly didn't see anything that really reminded me of myself aside from depression which I have been diagnosed with(including TMJ). Though I'm not really an expert obviously.

I do sometimes wonder if the pain is from my depression, but it doesn't really explain a lot of my other concerns in the symptom list. I think I will spend some time today looking for a rheumatologist as was suggested though that requires using my actual computer so I might not get much searching done.

Is it painful for any of you to sit up straight for a length of time? I can't really do much sitting up. And the light from the computer hurts my eyes. Dunno if that's related or not.

bridget10
Regular Member


Date Joined May 2010
Total Posts : 200
   Posted 8/6/2010 9:59 AM (GMT -7)   
Welcome to the forum! I, too am having chronic pain and wondering if it is Fibromyalgia. Everybody here understands, even if you don't have Fibro, they can all relate to the pain and the frustration of not knowing what you have. I hope you can get to see a doctor soon about it. Two years is a long time to have pain and not know what it is from! I have only had pain for three months now and still the wait is driving me crazy! You will probably need to get blood tests to rule out other things first. So far, I had a blood test and a couple of MRI's to rule out disc problems and Multiple Sclerosis (I started with a lot of tingling in my hands and feet and other symptoms that sounded like MS) THe only thing i found out is I have a bulging disc in my lower back but that it shouldn't be causing me to be in this much pain all over my body. So, now i am waiting on my follow up with Neurologist to see if he will refer me to a Rheumotologist.

I feel for you with not having insurance. It can get so expensive! I really hope something works out for you.

Congrats on being pregnant! I hope it goes smoothly for you (other than the pain) Keep us updated!
p.s.- there are a few others on here waiting on a diagnosis as well, so you are in good company.

Kellie

dodgingflames
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/6/2010 12:18 PM (GMT -7)   
Thanks Kellie. I did do some research on doctors in the area. The closest is about 40 minutes away but I don't know if he takes my insurance as it didn't say. I found one an hour and a half away that takes Medicaid but I don't drive and that's pretty far away. Plus I'm pregnant and I know regular doctors won't usually see you while pregnant but I don't know about 'rheumies'. Does anyone know if they will see you while pregnant? I could wait it out til October(when I'm due) if need be.

The main thing is that I thought the pain was from depression. I wasn't exactly worried about it because it wasn't that bad and I just attributed other symptoms to whatever was convenient at the time and ignored it as best I could(which is dumb >.<) though there were a lot of days it couldn't be ignored.

I just didn't want to think anything was wrong with me.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/6/2010 1:16 PM (GMT -7)   
In What Else Could It Be is a list of illnesses that have many of the same symptoms you are experiencing.  You don't know for sure what is going on.  That's why doctors run tests to rule these other ones out first because they can be medically treated and some of them, like Lyme and Lupus, REALLY need specific medication to get better.  So, until you are thoroughly checked out, you really don't know what is going on with you and the pain.
 
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

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 8/6/2010 6:01 PM (GMT -7)   
Hi Dodgingflames, sorry Im so late welcoming you but I havent been home all day. I am sorry you are in pain. Like others have said we here truly do understand what it is like to be in pain. You have had some great advice from everyone else.
Congratulations on the pregnancy. One thing I do want to say is after the baby is born you start feeling really depressed get help right away even if it means formula feeding your baby. It is hard being a new mom and it can feel overwhelming. Please dont be afraid to ask for help if you need it.
Once again welcome to the boards,
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/6/2010 6:18 PM (GMT -7)   
Hi DodgingFlames, Looks like you've made a great big set of new friends here today. :) Pretty cool, aren't they?

Try this for your search for a doctor:
www.medicare.gov/Physician/home.asp

It lets you put in your location and come up with a list of docs that are currently accepting it.

You're right, depression can be a reason for pain. It can be a reason for a lot of symptoms. However, I don't think you should wait until October to find out what it all is. ;-) You're going to be more busy after that baby is born than you are now. Trust me. New mom's tend not to think of themselves - so you will not have time for it later if you don't start it now. Whatever it is - once they put a name to it - you can start putting it right. That's the best thing for you and your new little family - getting it figured out so you can be the best for your baby.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!
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