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Posted 6/12/2015 3:38 AM (GMT 0)
Hello all, 
I'm new here. I'm looking for some info or support or really anything anyone can offer. I have been reading up on fibromyalgia since a friend of mine with it suggested I see a doctor about. 

I am a 25 year old female. I have suffered from joint and muscle pain since I was in the 7th grade. I was told that they were growing pains and that I was being a sissy. Ive been dealing with many of the symptoms thinking that they were normal pains of everyday life until recently more symptoms developed and I've read about fibro and really feel like I may have it. Everything I have read matches my symptoms. 

On top of there joint and muscle pain I have wide spread pain and what I call voo doo pain. It feels like someone has a voo doo doll of me and the pains can happen anywhere and last anywhere from a few seconds to few hours. I have problems with sleep, either I can't sleep so I'm exhausted or I can wake up after 15 hours and still be exhausted. I have horrible stiffness if I sit too long or stay in one position too long, I get pins and needles in my hands legs and feet. I am bed ridden during my period, I get so dizzy sometimes standing up I black out and have fallen a couple times. I also can't remember anything anymore which starting to become a huge problem as I am an online college student. I get tired going up the steps at my house. I get headaches all the time that can last anywhere from ten mins to ten hours. I have get hives for no rhyme or reason, I also get hives from the shower. I get eczema patches occasionally. My anxiety has gone through the roof because where pain will randomly happen.

I just got health insurance and have an appointment with a general practice doctor but my appointment is July 13th. 

I feel like I'm going crazy. Any information or advice anyone has would so so so appreciated!!
Posted 6/12/2015 5:22 AM (GMT 0)
Welcome to HW.

We're a very supportive and informative group here.

We've learned that what works for one doesn't work for all, but we have tons of suggestions for you to try out.

Glad you were able to get insurance. I lost mine for two years and just got it back two months ago.

Be patient with the doctor as he rules out everything it could be. When he can't find out what it is then it's usually is fibromyalgia. Because there's no true medical test for fibromyalgia.
Posted 6/12/2015 5:31 AM (GMT 0)
Are there any tests specifically and should I ask to be sent to rheumatologist or should I stick with a pcp? I'm so lost. This has been horrible!
Posted 6/12/2015 12:34 PM (GMT 0)
Welcome, thissell08! You'll find good support at this forum. Joy already gave you great advice.

Many people see board-certified rheumatologists. I started out with a pcp, who sent me to a neurologist. I had several tests done there. It's entirely up to you as to which type of doctor to see. Personally, I think any of the 3 are good, and my pcp started things rolling by ruling out other conditions. He or she could then suggest a rheumy or neurologist from there, or, of course, you could just start out with either of those two.

I had some MRIs, nerve conduction tests, balance tests, and many blood tests. Your doctor can guide you on testing.

Sorry you're dealing with so much! Reading your post reminded me of my issues.

I so remember being told I had "growing pains" when I was young! I remember in grade school once holding onto a paper bag for some project for several minutes and my fingers got so sore. I did find out that I also have a separate neuro condition, likely since birth. The neurologist's best guess was cerebral palsy. I did have severe health issues as an infant, though, and nearly lost my life, so I'm guessing it could be related, and UNrelated to fibro.

It helps to write everything down before your appointment and just sit down and talk to your doctor. That really can relieve the stress---just tell him/her what you've said here in your post. It's a journey battling fibro, but you have lots of friends here who can help. We're in this together!

Best wishes and keep us posted.
Posted 6/12/2015 3:24 PM (GMT 0)
Thank you guys for all of your kind words and support. I'm counting down the days until my doctor appointment. I will definitely keep everyone updated.

Is there anything in the mean time that you guys could recommend to help my pain levels. I try Advil or Tylenol and it just doesn't do it? I'm going crazy!!
Posted 6/12/2015 3:51 PM (GMT 0)
Have you tried over-the-counter muscle rub creams? Warm baths (epsom salts added are a plus for many people)?, a heating pad? Electric blanket? Bed buddy to microwave and put around your shoulders or wherever you hurt?

You could also phone your doctor's nurse and see what they recommend. Perhaps they could give you a prescription for something if you're very uncomfortable. Yes, fibro can be such a bummer! But it helps to try to relax (not always easy, I know) and divert your mind as best you can.

Also, when you see your doctor, you might want to talk about supplements such as magnesium and fish oil.

Hope things are better soon!

ETA Sorry, busy morning here, and I just erased my answer re taking Tylenol or whatever you normally take for pain---I hadn't noticed you mentioned you already took some.

I would go with contacting your doctor's nurse for advice. Be sure to mention how uncomfortable you are and that you really need something to help with your pain.

Hope things are better over the weekend---let us know. I would also try to find something quiet and relaxing to do, if at all possible. I know sometimes that will calm my pain.
Posted 6/12/2015 11:49 PM (GMT 0)
Hi, welcome,

Sorry you are having so much pain...the topical pain relievers can assist..something like bio-freeze..i use a product called pain erase.

Also if you google acupressure points for specific areas , you can often dial back your own pain levels.

My primary dr. Helps me with mine..and i go for very gentle therapies...i also stretch daily, some light yoga...

Had mine since childhood also, mine is a genetic form from my mother..

Heat helps me , but my sister uses cold packs, so experiment and see what happens..
Posted 6/13/2015 1:00 AM (GMT 0)
My doctor a office told me to take over the counter meds because they have never seen me before. I have not had a primary care doctor since high school. I will definitely try the bio freeze and warm soaks. Cold usually makes anything going on worse. Im trying to do what i can to ease it while i wait for my appointment. Thank you so much for all the tips and advice.
Posted 6/13/2015 7:59 AM (GMT 0)
Welcome. It takes time to find a clear diagnosis, hang in there. My duaghter was diagnosed at 18 , she is now 25. I was diagnosed at 38. There are so many knowledgable Peers here, keep us informed. Remember that we all have differing symptoms but common ones as well. We also all seem to react differently to different medications and some of us don't use any or use mostly botanicals. It's a new life. May I suggest keeping a daily journal for six months? Keep track of all activities and increase or decrease in pain, sleep etc. Even if pain is delayed to next day patterns start to give you a clear idea about triggers.
It was a great way for me to begin a stay well plan.
Blessings
Posted 6/13/2015 11:17 AM (GMT 0)
Hi, Thissell, and welcome! No you aren't crazy. It does sound like you have Fibro. It would be good to see a board certified rheumatologist who believes in fibro. Ask first. Since there is no good test for Fibro, you should be run through a myriad of tests to rule out other illnesses that have many of the same symptoms as Fibro...things like Lyme disease and lupus. Once they are eliminated, usually a diagnosis of Fibro 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 would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. All of Fibro 101 is good so do read it.

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

Sherrine
Posted 6/13/2015 4:01 PM (GMT 0)
Thank you all so much!! The support here is amazing. I have started a pain log for doctor hoping it may help my doctor. I have never had to keep one. What info should I have in it other than where the pain is and what level of pain I'm in?

Regarding the rheumatologist I found one that I want to go to. My mom has RA so I was thinking of starting at her rheumatologist but I don't know if he believes in or treats fibro.
Posted 6/13/2015 9:24 PM (GMT 0)
I thought rheumatologists were only if you have an autoimmune disease? Which I imagine would be diagnosed by the pcp.
Also give a Naturopathic dr a try. They were the only ones that found out I have an MTHFR mutation and cannot absorb vit b unless its methylated. The pcp would NEVER EVER have thought to test for that.
They can also do other testing pcps would never think of or do not think are important, which is pure ignorance.
I still do not know what is causing my issues...pain, pricklies, constant itching.
Posted 6/13/2015 10:12 PM (GMT 0)
On the other hand, it is my PCP that has diagnosed every aliment I have, not all MD doctors are in the category of not knowing what is going on.

And Yes a rheumatologist is usually who people see to diagnose fibro, but not all of them believe in fibro. If I was you I would call the office and ask if they treat patients with fibro.
Posted 6/14/2015 2:55 AM (GMT 0)
A journal should have; hours slept, how well did you sleep, was it a odd position, did you wake up in bed, what activities did you do and how long, did you notice an increase in pain after or several hours later even the nxt day or morning, emotional stresses, fun times. After several months of general entries, your not writing a declaration of independence, more like crib notes, a pattern will emerge.
Lots of Peers create a spreadsheet to keep this simple.there is also downloadable WRAP plans. These are made for mental distress patterns and wellness plans but after you are more clear on your triggers and helpers you may want to investigate it for your wellness plans.
Keep it simple! Your already overwhelmed.
Posted 6/14/2015 6:44 PM (GMT 0)
Lucinda listed a good set of things to keep in your journal. Start off by just writing any time you feel pain. Add foods you ate and also when you felt good. Mention weather patterns too. Ifyou just write everything you think of down, it can be a bit cathartic and you can always arrange the info later when you see the pattern emerge as she mentions.

For immediate pain, I always suggest the same few things that I go back to when I can't figure a pain out.

1. Comfortable clothing. Remove any piece of clothing that is bugging you. It helps you narrow down what to fix. Now is the time to pick your most comfy clothes.

2. Arnica cream. My PT doctor uses it and my massage therapist uses it. There are more expensive brands, but I discovered that almost every drugstore carries a basic one. You only need a little bit. Rub it in anywhere that hurts. The Arnica is a natural pain relief. I have better luck with that than internal NSAIDs because I have IBS and the Arnica works on nearly everything.

3. Soft comfy heat. If possible invest in microfleece heating pads. They can normally be washed and allowed to drip dry for cleaning, but they are soft and seem to distribute the heat well. Sunbeam makes one for neck and shoulders in an "E" shape. The middle of the "E" goes up your neck and the flaps on the outside go over your shoulders. Mine goes everywhere with me. IT has a small magnet that allows to flaps to cling together and lets me have some flexibility in putting it around arms, etc. Heat is always my "nothing else is working" go to.

Ditto to the last piece of advice AngelLisa gave you. Trust your gut. If you aren't comfortable with a doc when you work with them, start looking further. I had a bad Rheumy but there are good ones out there. Find someone you like and don't second guess your feelings on the subject of your treatment. If you don't like them, doesn't matter if everyone else in the world does. You need to have confidence in your medical professionals.

Good luck and let us know how it goes.
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