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I think I have fibromyalgia

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Posted 2/17/2010 11:36 AM (GMT 0)
Hello everyone. My name is Samantha. I am almost 22 and I have a son named Ethan. I live in California. I am up right now (at 3:25am) because my fingertips went numb today and it has taken over both of my hands. This has happened before. I think I have fibromyalgia. I suffer from post traumatic stress disorder and depression. I hate using the word suffer but I dont know what else to say. My doctor isn't the best dr and doesnt listen very well. I am almost 22 and I had to bring my mother with me to see him for her to explain to him that I wasnt lying about having anxiety all the time and to get me the proper help I needed with my depression at the time. He thought I was just wanting perscription drugs. He wont help with ANYTHING! That is horrible. But I have medi-cal also known as cen-cal because I am a single mother and a student and I cant afford any other health care so good doctors are rare. I have had the following symptoms for over a year, pain in my ankles, knees, lower back, elbows, clavical area, tired all the time, hard time falling asleep and staying asleep, I could wake up from sleeping 8 hours on a good night and feel exhausted, stiffness in joints, urinating more than normal, headache always, fingers sometimes twitch, nausea sometimes and major weakness. Now my question to all of you reading this is what should I do? How should I approach my doctor about this? How can I get through to him that I feel I have fibromylagia and need him to take me seriously and not brush me off? Should I search for a new doctor? What can I do to help me now? I cant take these aches and pains anymore. I am a single mom to a very active 4 year old boy and feel horrible that I cant just play and run around with him because Mommy feels bad today--again. I am awake right now with my knees aching and a horrible headache and I feel like I am at the end of my rope. Any response is greatly appreciated.

Respectfully,

Sam

Posted 2/17/2010 2:46 PM (GMT 0)
Hi Sam and welcome. There are some docs out there that still don't believe in fibro so you could have one of them if he refuses to talk to you about it. You might want to find one that does by calling around and asking if the doc treats fibro.

 

There is a process to getting a fibro dxs. Read the fibro 101 thread, second on first page, it contains lots of great info including "what else could it be" which tells you the disorders that have to be ruled out before you can get a dx of fibro cause fibro can mimic these disorders.

 

If you do have fibro heat is our best friend in any form. Sleep problems are common with fibro. I haven't been doing too well with sleep for weeks now and it does make a big difference in how I feel.

 

Good luck and I hope you get answers soon.

 

luv and hugs

Marlee

Posted 2/17/2010 4:05 PM (GMT 0)

Hi, Samantha, and welcome!  I see that Marlee directed you to the Fibro 101 page.  In there, there is a link listing symptoms of fibromyalgia.  It sure sounds like you have a lot of them.  Anyway, you could print out the list and highlight the symptoms that are happening to you.  This might get your doctor to listen.  It's really difficult when you have a doctor that doesn't listen to you. 

Unfortunately, there are still doctors out there that think this is all in our heads!  Yeah, right!  I'm sure there are other doctors in your medi-cal plan that you could call and see if they treat patients with fibromyalgia.  Instead of looking under the "general practioner" list, try looking under the "Internist" list.  They have more education than a general practioner but they are also used as a primary care physician.  I know that's what I would do.  I personally use a board certified Internist as my main doctor and he has done a good job for me.

Another suggestion is keep a journal.  Link #13 in Fibro 101 has a pain journal you can print out and also it shows good ways to describe your pain levels.  Keep the journal, along with your pain levels with certain activities, and that will help a doctor to determine what might be going on with you.  Between the pain journal and the highlighted symptoms, they can see what you are going through.

Marlee is correct in that tests should be run to rule out other illnesses before a diagnosis of fibromyalgia is given.  A lot of the tests are done through blood work so perhaps they have already been completed.  If you do change doctors, get your records from the first doctor.  Remember, the records belong to YOU.  You/insurance paid for his services and you should have a record of what has been done.  A new doctor would want to see what tests have been run so they don't duplicate them.

We are here to help you.  Don't hesitate to ask questions.  Let us know what happens because we really do care about you, okay?  Hope to hear more from you soon.

Sherrine

Posted 2/17/2010 4:24 PM (GMT 0)
Thank you so much. I only slept for 2 hours last night. I feel horrible. Reading this has literally made me cry because you are giving me hope. I was sent to a psychiatrist because he believes it's in fact "in my head". I have had blood work done but it was a whole ago. This has been going on since my son was like 2 1/2 or 3 and he will be 5 in June. I will start doing what you said and I will let you know what happens. Best of luck to you both.
Posted 2/17/2010 4:57 PM (GMT 0)
I have an appt with a doctor today. The receptionist was very nice and we have the same birthday :) She really helped me and got me in this afternoon. So I will let you know what happens. Are there any specific things you recommend me telling her?
Posted 2/17/2010 5:01 PM (GMT 0)
Also take charge of your medical care don't always take no for an answer or here take this pill. I had to sit down with my doctor and pretty much say enough is enough and this is what I want done before they truely took me seriously. Now as of six days ago I have the diagnosis of fibromyalgia and I feel like I am getting somewhere. I have been referred to a reumatologist and loving it because I feel like he listens to every word I say and at the end of the appointment he ask me if there is anything else I want to discuss this is such a change from what I have had. the last two days I have had about 40 % improvement in pain and amount of sleep I am getting and it is so so exciting for me because I have suffered for way too long. Like you I also "suffer" with PTSD one thing to think about that I have learned very quickly on here is that stress can make the pain worse it also makes sleep come harder. Practice relaxation and grounding techniques and attempt to eliminate the sources of stress that you can, it makes a difference.
Posted 2/17/2010 5:16 PM (GMT 0)
I havent been diagnosed yet but I honestly would bet money that is what the problem is. And stress is my middle name recently when it has gotten worse. My best friends mother passed away from cancer in September, my father passed away from liver failure in October, I got into a horrible car accident in November, and my friend committed suicide in December and my son just recovered from bronchitis. It is never ending with me I swear. But thank you so much. I can not tell you enough what your encouraging words have done for me. I am so grateful to have stumbled across this website early this morning. I will let you know what happens. I did get all of my records transfered over to this new doctor today though. I couldnt stand my other doctor. And yes this new one is like 20 miles farther from home but I dont care so long as she will help me.
Posted 2/17/2010 5:57 PM (GMT 0)
Samantha, I'm so happy you are seeing another doctor.  Tell her what you told us.  Take a few minutes to print off the list of symptoms and check the ones that you are having difficulty with.  That's a start.  You should have a good relationship with your doctor.  After all, they are working for you.  You are paying them.  I always research things out and then pass them by my doctor

 

There is plenty of hope with fibromyalgia.  I've had it nearly 23 years and have had a full and enjoyable life in spite of it!  We can help you with ideas and  you, in the meantime and with the help of a good doctor, will be trying different things to see what works for you.  I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 to help me with my pain and fatigue.  There are links in Fibro 101 about the vitamins and supplements and how they work to help you.  They don't work for everyone, but many here have had success with these treatments.  It seems many with fibro are deficient in these vitamins and nutrients.

 

Keep moving.  If you sit or lay too long, you will be stiff as a board.  Heat helps, too.  Many have a Bed Buddy.  You can get these at Walgreens or you can make your own by taking a tube sock, filling it 2/3's full of raw long grained rice, and tying a knot at the end.  Pop it in the microwave and it releases moist heat due to the moisture in the rice.

 

Just ask questions and we can help you here.  I'll be waiting to see how  your doctor's appointment went!  I hope you have found a real gem.

 

Sherrine

Posted 2/17/2010 6:07 PM (GMT 0)
hi Sam! my symptoms started just as you described. i was diagnosed in april. i am currently taking lyrica and it's really not helping that much. i'm going to a new dr. friday. hoping for some relief! welcome to this site! karen and marlee are great! good luck with the new dr...let us know how you're doing. Donna eyes blush idea cool
Posted 2/17/2010 6:10 PM (GMT 0)
sherrine sorry i forgot to mention your name! you're great, too! Donna eyes nono blush cool eyes
Posted 2/17/2010 6:24 PM (GMT 0)
You're pretty great yourself, Donna!  yeah

 

Sherrine

Posted 2/17/2010 6:53 PM (GMT 0)
I'm so happy you got into a new doc today and may finally get some answers. It helps so much just to have a doc that will listen and take you seriously. Sometimes we have to earn that with our voices and even body language when we go to the doc. That's what I finally had to do to stop my doc from thinking it was peri-menopause, anxiety and meds I was taking for it or my hectic stressful life.

 

You have been through so much for someone so young and for that I'm sorry. Hopefully, you can start healing from all that.

 

This is a great group of people and I'm glad you found this forum this morning too.

 

Thanks Donna, I'm in such a fog today I'm not sure what my own name is. smilewinkgrin

 

luv and hugs

Marlee

Posted 2/18/2010 2:22 AM (GMT 0)
Well I saw my dr and she made me cry because I have been doing this unexplained for close to 2 years. She made me feel like someone was listening and I cried. She explained what fibromyalgia is. She requested blood work and a thyroid check. She wants me to go back in exactly a week. She wrote me 2 prescriptions. I am waiting for them to be filled so when I get them in about 10 minutes I will let you guys know what they are. I do my blood work tomorrow morning. She was amazing. Hopefully we will get some answers with this blood work.
Posted 2/18/2010 2:48 AM (GMT 0)
Hi Samantha,

I would also like to welcome you to the forum and let you know that I am so happy that you have found a good doctor. Most likely, your bloodwork will come back negative if you have fibromyalgia, but that is how they have to rule everything else out. But having a good doctor is such a relief and now you will know what you are dealing with. Do let us know what medications she put you on. And I do hope that they work for you.

Donna,

Thank you for the wonderful compliment. It really did my heart good.

I hope that everybody has a good night. Take care all.

Hugs, Karen
Posted 2/18/2010 3:04 AM (GMT 0)
They are celexa and klonopin.
Posted 2/18/2010 5:43 AM (GMT 0)
Sherrine I love the bed buddy. I made 2 and am using them right now on my ankles and knees. I am going to the sock store we have that's by the drs office and in going to get zebra socks and pink socks and make them cute. So the blood work comes back negative and that's how they rule out every other possibility. The klonopin has worked within 10 minutes of taking. It made me feel like I can actually sleep tonight. I am fasting for my blood work at 8am tomorrow. Then I see my dr next Wednesday in the morning. Honestly I have prayed and thanked God for you amazing souls. I am so grateful for the tips, tricks, open arms and love that I felt from the beginning.
Posted 2/18/2010 8:05 PM (GMT 0)
Samantha, it sounds like you have found a good doctor!  I'm so happy for you and happy that you are getting some relief now.  It's awful to hurt so badly but treated like you are a mental case.  Fibromyalgia is real and it is painful.  We look just fine so people really don't understand.  But, you would think your doctors would understand!  You did the absolute correct thing in dumping your other doctor.  You now have the hope you were searching for!

 

I'm sure you will have many questions so don't hesitate to ask.  Also, read the info in Fibro 101 and also back posts.  There is a world of information in them, too.  Knowledge is power and you want to have the power over this illness.  You want to be in control of fibro instead of fibro being in control of you. 

 

Again, welcome to our fibro family!  We are happy you are here.

Sherrine 

Posted 2/18/2010 9:50 PM (GMT 0)
Hi MommmyisQueen. I'm also very young with fibro. This has been going on for 2 years now. I have been through atleast 20 doctors and I have finally found one that took me seriously- instead of just saying....you're too young to have pain or you're looking for drugs or all of your test came up negative so there's nothing wrong with you....It was the most devastating thing I have ever gone through... well not really, but it was rough! I know exactly what you're going through! I'm 27 and have a 9 year old that I really can't do anything with anymore cause mommy is alway "sick" I want you to keep trying a doctor that will help you...I'm not sure how severe your fibro is but mine is terrible! I feel like I have the flu everyday....That's the best way I can explain it. I saw that they put you on celexa. I'm not sure what that is...I've been on everything but that I guess. I found that the anti-depressants did a reverse act on me and made me depressed. The only thing I take now is hydrocodone...Which after 2 years barely works anymore. I hate to tell people I take narcotics but it is the ONLY thing that cuts the pain at all! Nothing else has worked. I'm not a drug seeker...I barely took tylenol before I had all these problems....I wish you the best of luck and I will be praying for you because I know exactly what you're going through....God bless you!!!! xoxoxo
Posted 2/18/2010 10:37 PM (GMT 0)
Celexa is an anti depressant. I have PTSD and depression. The klonopin helped me to sleep last night along with my sock of rice-which I love. I think you hit the nail on the head, waking up feeling like you have the flu daily. So I'm not sure exactly what happens with these blod and urine tests. She said she wanted to check my thyroid and run a panel. What is the panel? Now I have all kind of questions.
Posted 2/18/2010 10:59 PM (GMT 0)
The blood work is to rule out other illnesses.  There are quite a few illnesses that share the same symptoms as fibromyalgia.  Hypothyroidism is one and that's why she is checking your thyroid.  Panels are blood work.  I have a liver panel done twice a year because of the ibuprofen and Tylenol that I take for pain.  So, your new doctor is checking out everything to rule out other illnesses.  There is a link in Fibro 101 called What Else Could It Be.  It's these things she wants to rule out first. 

 

Many with fibro are on antidepressants so that's not unusual, either.  Seratonin is a brain chemical and I believe that many don't have enough of it and the antidepressants help regulate that.  I'm not sure because I don't take antidepressants.

 

These are good questions to ask your doctor next week.  Start your list now.  I never see my doctor without a list of questions in my hand.  He already knows he will have to answer them before I let him sneak out the door!  smilewinkgrin   I keep the list on my refrigerator and when I think of something I want to know, it goes on the list immediately...before the fibro fog forgetfulness hits!  It's a very good practice to start.

 

Sherrine

Posted 2/19/2010 3:23 AM (GMT 0)
So if they come back negative then it's fibromyalgia? I am so nervous for Wed. I told my friend I feel like it would give me an answer as to what is going on with me.
Posted 2/19/2010 5:06 AM (GMT 0)
I just wanted to say thank you again. Just being able to speak to all of you have really helped me in so many ways it is unbelievable. Thank you from the bottom of my heart. I felt so welcomes from the beginning. I will keep you guys updated.
Posted 2/19/2010 3:04 PM (GMT 0)
I'm so happy you found a doc that listened Sam, yeah, that is a big step in the right direction!!! The blood work is a start and will tell them a lot. I probably went through more test than most cause pain wasn't my biggest issue at the time, fatigue was.

 

I take celexa and xanax (which is kinda like klonopin) and I use it at night to sleep better.

 

luv and hugs

Marlee

Posted 2/19/2010 3:46 PM (GMT 0)
The blood work you had will help to rule out the other illnesses.  Your doctor might do more testing...I'm not sure.  Did she check you for the tender points?  Here is a chart showing where they usually are but now some are saying this isn't accurate.  It's difficult for the medical community since they don't know what is causing all this pain in fibromyalgia patients.

 

http://adam.about.com/encyclopedia/Fibromyalgia.htm

 

Sherrine

 

Posted 2/19/2010 8:37 PM (GMT 0)
She drew something on my chart and asked where it hurts. She documented where I said it hurts. She said every spot I said was a trigger point. Test results wednesday so hopefully I can sleep until then. I am so tired right now but my son is getting dropped off from preschool by his Grandma right now. So maybe I can get him to lay down with me for a few minutes. I just feel exhausted. My family has been more understanding since the doctors visit. When they see me lay down early or when they can tell I hurt they dont say things anymore like, "stop being lazy." or "What are you complaining about now."
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