New - literally just diagnosed

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anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 11/14/2008 10:02 AM (GMT -7)   
Hi all. I am new here and literally was just diagnosed this morning - after 4+ years. I can't say I'm thrilled with the dx, but I know there are worse things and so I refuse to be too pessimistic. A bit about me: I'm a young'un! I just turned 24. Any other youngsters around here? I've always had random/weird aches and pains. Even as a child my whole body would ache if I had a virus (any virus at all) or slept somewhere unfamiliar, got over-tired, etc. 4 years ago I randomly started to ache EVERYWHERE and first thought the pain was in my bones. I was tested for Lyme, and had all my rheumatoid factors, SED rate, etc checked. Everything came back normal and because I was so young it was dismissed. I've been back and forth, back and forth with different doctors and nothing has ever showed up in tests. Yet I would just have this horrible aches and pains, some days/weeks much worse than others. Last summer (not this past one, the one before) I had about 2 weeks where it was a whole new level. The pain was almost unbearable, I couldn't even touch my arms to my desk at work, I had a migraine, ugh everything just hurt. Over this past year I've been working harder to get some sort of answer because I was just convinced something terrible was wrong with me - cancer, lupus, I didn't know. I also developed nerve pain in my arms and feet, which one doctor diagnosed as "pre-herpetic nerve pain" and gave me Valtrex of all things! Didn't help of course. I've been to my GP multiple times over the past few months and I guess little by little he started putting piece of the puzzle together. My diagnosis of IBS (which I've had for 6 years), my Interstitial Cystitis symptoms, my low Vitamin D levels and pain. Well he researched Fibro and learned about the tender points and voila! We arrived at a diagnosis. He said he thinks it's "mild" right now and that the periods of weeks and days where it's worse are called "flares." One thing he said is helping me is that I exercise on a regular basis. I'm a runner and have been since high school. I have noticed that days where the pain is present, if I make myself get out and run/jog, I do start to feel better and the relief lasts for several hours. I'm going to keep up with that as much as I can in an effort to keep the pains at bay. I know some of you are much worse off and probably can't even imagine running right now and for that I am so sorry. Is it true though that this is not progressive? Can I expect it to get worse as I get older? The only medications I take right now are a Vitamin D supplement and an iron supplement in conjunction with my multi vitamin. Oh and Paxil for my anxiety, which I've also been dx'd with for 6 years. The doctor offered Lyrica (?) as an option but I feel as though I can maintain my pain relatively well right now on 600 mg of motrin 2x per day. I've been doing that for 4 years!

I have a few questions. Are the migraine-type headaches that last for a few days normal in Fibro? Does anyone else have IBS or IC? Is it OK for me to drink caffeine to combat the fatigue? Anything other tips I should know. I am going to go back and search the site but just thought I'd introduce myself!

anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 11/14/2008 10:11 AM (GMT -7)   
Oh I forgot one of my dx's...Restless Leg Syndrome. That's what the iron supplement is for. The doctor said getting the iron levels up might help control the symptoms, especially while I sleep. Apparently it's recommended that people with RLS have levels above 40 and mine were 25. Anyone heard this?

leemadd
Veteran Member


Date Joined Sep 2008
Total Posts : 532
   Posted 11/14/2008 10:32 AM (GMT -7)   
Hi and welcome you will find this sight very useful. very help ful and sometimes people will make you laugh until you p your pants.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40573
   Posted 11/14/2008 10:49 AM (GMT -7)   
Hi There,

Welcome to HealingWell's fibromyalgia forum. You definately have come to a wonderful site.

I am thinking the headaches are comeing from tense neck and shoulder muscles. I have that problem. When we get pain our shoulders and neck seem to tense up. Even to the point that it can feel like a migraine.

I take muscle relaxers and that helps.

You will be getting more responses to your post with a lot of information.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 11/14/2008 10:49 AM (GMT -7)   
Hi, Anxietyridden, and welcome to the forum!  Yes, people with fibro can have IBS and IC.  Check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibromyalgia and you will learn a lot there.
 
I take ibuprofen and Tylenol for my pain and I started taking malic acid/magnesium supplements for pain and fatigue.  These have helped me and other members on this forum but they don't work for everyone.  I like to try more natural things before heading for the "big guns" in the pharmacy.  There is a link in the Fibro 101 thread that tells you all about these supplements.  Read that and see what you think!
 
I'm glad you discovered that if you exercise you will be in less pain.  I preach that all of the time.  Many here, me included, really can't run but walking and stretching exercises help us.  Keep running...especially if you enjoy it.  If you see the pain starts to increase as you get older, be sure to walk and keep moving.  If you sit or lay too much you will be stiff as a board!
 
Unfortunately, most of us feel that the fibromyalgia has gotten a little worse as we age.  Some of it could be getting older, too.  I'm 61.  But, I still can manage the pain and enjoy my life and have a full life, too!  So don't be concerned about that.  Besides, worrying just makes the pain worse. 
 
I have caffinated tea every day.  I wouldn't suggest drinking a whole pot of coffee, but a couple of cups a day shouldn't hurt you.  At least, I've never had a problem with caffeine.
 
Hot showers and moist heat are wonderful for the pain.  Many here use Bed Buddies.  You can get them at Walgreens and other places.  You heat them in the microwave and they give off moist heat.  Rice bags do the same thing.  You can make a small rice bag by using a tube sock, filling it 2/3's full of raw long grained rice and tying a knot at the end.  Pretty simple, huh?
 
I see you are low on Vitamin D.  We have been talking about that on the forum the past couple of days.  This seems to be quite common with people that have fibro.  So, you are not alone.
 
I can't answer your questions about migraines because I don't get them.  I get the painless ones.  I see the flashes of lights in my eyes but there is no headache.  If I lie down, it goes away for me.  But, I know some members get migraines and I'm sure they will be along shortly and share their experiences with them.
 
I'm so glad that you found us and joined in!  We have a good group of people in this forum that have good ideas to help you live a full and enjoyable life with fibromyalgia.  Read posts, the Fibro 101 thread, and ask questions.  That's what we are here for!  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


anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 11/14/2008 10:55 AM (GMT -7)   
"I am thinking the headaches are comeing from tense neck and shoulder muscles. I have that problem. When we get pain our shoulders and neck seem to tense up. Even to the point that it can feel like a migraine"

I think this makes sense gettingby. Some of my worst complaints are the pain in my shoulders and neck. I like to sit with a heating pad on it. Something to keep in mind.

jhawkfan
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 11/14/2008 1:51 PM (GMT -7)   
Hey all
Can you guys tell me where to find the Malic acid/ Magnesium? I looked at Walgreens and they do not have it. Do I need to go to a healthfood store or vitamin store? I go to these shops enough so no big deal for me to pick it up there. Thanks ahead of time! Sheri

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 11/14/2008 2:01 PM (GMT -7)   
There is a link in the Fibro 101 thread all about it.
 
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


garnetstar
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 11/14/2008 9:49 PM (GMT -7)   
Hi! I also am 24 and just got diagnosed. I too was having migraines lasting more than 2 days, also extreme fatigue and dizziness. The doctor gave me Elavil for the migraines, and I haven't had one since. I know it's hard sometimes (at least it is for me) because people don't understand since we are so young and don't "look" sick. I just learned to ignore those people, and just thank God that I'm not unable to walk or get out of bed. One thing that I found that helps for the pain is moist heat, so I bought a bed buddy for my neck and shoulders. I also found a Therma Cane for my shoulders and back too. Just know that you're not alone! And the symptoms can and will get better!

mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 11/15/2008 9:00 AM (GMT -7)   
Hello, and welcome to Healing Well! You will find so much info and support here to help you cope with your dx. I know it has helped me make sense of a body that seemed to be rebelling on me. I take malic acid/magnesium, and it has really helped me with fatigue and the burning, weak muscles I got when I exercised. I was never in shape, but I do exercise regularly now, adn it has helped so much with the pain too. If I don't do it for a while, I do end up worse off. I have just started running now that we have come by a treadmill. I've been wanting to run since I quit smoking 5 years ago. I'm not very good at all, but I have managed to work myself up to 90 seconds now, but the whole time I run, my feet, ankles and shins hurt tremendously. Hopefully I can continue to build tolerance. Oh, adn I was having daily spike headaches, adn these have disappeared since my doctor has put me on amitriptyline.
Waiting for appointment with rheumy (March 2009) to get an official dx. waiting, waiting, waiting....
Taking malic acid/magnesium combo, what a life saver! and amitriptyline


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/15/2008 9:47 AM (GMT -7)   
Hi anxietyridden and welcome to the family. I'm glad you got a diagnoses and know what you are fighting. Sadly, we have many your age on here and younger.
 
This is a great place to learn and we all understand what each other is going through.
 
I have IBS and other digestive problems, most of which I had long before fibro. Anxiety and panic attacks were the beginning of my down hill slide that led to fibro. I have a lot of it under control now but not all of it.
 
I can not take narcotics so I take 4000 mg of tylenol a day, use moist heat and TENS unit when it gets real bad.
 
I have a lot of headaches but I believe they come from the neck muscles which is a bad area for me.
 
You have a great attitude and that will help a lot with fibro. We have to cop an attitude and be determined not to give into this DD. I am 58 and there are a lot of things I can no longer do and I have had to prioritize what is important in my life but some of the things I have given up is non essentials or things I probably shouldn't have been doing in the first place. Fatigue is a biggy for me and I have to use my energy wisely.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Leeriesan
Regular Member


Date Joined Oct 2008
Total Posts : 90
   Posted 11/15/2008 5:58 PM (GMT -7)   
Hey and welcome to the forums - there are a few of us younger folk on here - I'm 21 and currently in college. I get a lot of migraines - they last for...well...a long tme. I dunno if its "normal" but I get them a lot. Happy posting!
~~Asthma, Reactive Airway Disease, Allergies (to nature), Fibromyalgia, Kidney Reflux Disease, Chronic Migraines (docs currently working on those), Generalized Anxiety Disorder, Depression, Restless Leg Syndrome, and a few others that remain undiagnosed because I don't feel like being on anymore medication than I am already on. ~~

~~ Allergra, Singulair, Topamax 50mg 2x/day, Frova, LoestrinFe, Cymbalta 90 mg, Lyrica 50mg 5x/day, Flonase, Albuterol inhaler and nebulizer, Amrix, and a daily dose of chocolate ~~

~~ I'm 21 and trying to be optimistic~~


Corrie_1
Regular Member


Date Joined Oct 2008
Total Posts : 185
   Posted 11/15/2008 10:28 PM (GMT -7)   
Hey! Good luck from me too :) I was diagnosed this October. There is a lot of useful information here on the boards and don't be scared to ask questions... everybody is really friendly :)

I'm also on Paxil.. I started taking it when I was diagnosed to help sleep, but now I'm using it for anxiety as well.

Has your doctor asked you about your sleeping habits? You said you have RLS and most people with Fibro also have problems sleeping... I find on nights that I sleep restfully... I experience less pain and fatigue than when I'm not sleeping well.


Diagnosed with Fibro - October 2008
 
Gabapentin 300mg/Paroxetine 20mg/Armitriptyline 40mg to help me sleep 
 
Lorazepan... when things get real bad.
And I'm not fond of people who don't label pill bottles.
                                                                                                                 
 
 

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