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FibroFaith
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/12/2009 3:32 PM (GMT -7)   
I am new to this forum, the first I've ever been on.  My name is Lynn and I was diagnosed with FM 25 years ago, what ever it was called then.  Probably had it since teenage years.  I also have CFS, MVP, PCOS and a host of other problems not connected to FM.  I have dealt with it in many ways either by getting treatment or just taking lots of ibuprofen.  Right now I use the ibuprofen, Effexor and Skelaxin, a muscle relaxant.  All our stories and symptoms sound the same but yet we have different aspects that bother us the most.  I can't stand how people don't take FM seriously because you look good or hide the symptoms.  It is thought of as non serious illness.  I see this in my church where we all band together and help each other, but no one says a thing to me.  Matter of fact, they keep asking me to volunteer.  I can't function most days and the brain fog is frustrating.  Most afternoons I have to stop my life and rest for hours.  I either have insomnia for days on end or excessive sleep for days. I have episodes of intense pain that comes on in a matter of minutes, sometimes all down one side of my body.  My meds. don't work all the time  and the pain and other symptoms can last for days.  I feel like my body is turning to concrete and I am in another dimension....sorry, its the only way I can describe it.  Dizziness and nausea often accompany my episodes.
Thankfully my family is accepting of this.  My son has this too.  He understands how I had to rest for most of his childhood as he rests constantly too.  
 
Does anyone have any of these symptoms?  What do you do for it and/or what does your Rheumy say about it. 
 
I put a subject line in so people will stop by to welcome you!  

Post Edited By Moderator (Sherrine) : 8/12/2009 4:57:31 PM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 8/12/2009 3:56 PM (GMT -7)   
Hi, Lynn, and welcome!  Yep, we've heard this all before.  My pain centers in my back, shoulders and neck primarily and my right side is worse than my left most of the time.  There is no rhyme or reason for what fibromyalgia does.  I've had it 22 years and they called it fibrositis back then.  Is that what your doctor called it?  Just wondering.  Thank God I didn't get the "it's all in your head" treatment!
 
I, too, take ibuprofen with food and also extra strength Tylenol for pain.  I also take malic acid/magnesium supplements and they have helped me a lot.  They don't work for everyone but you might try that since many with fibro are deficient in these nutrients.
 
I also have to take extra vitamin D3.  I live in Florida and who would imagine I'd be deficient in vitamin D, but I am.  I'm presently taking 3,500 IU of D3 a day.  Many with fibro are deficient in this too so it might be worth checking into.  It can cause pain and fatigue.
 
Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good info about fibro, including a link all about malic acid/magnesium supplements and how they work in your body.  There are some good stretching exercises in there too that really do help.
 
I'm so glad you found us and joined in!  We have great members here that love to help one another and, as a bonus, we really do care about each other!  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


Irish Babe
Veteran Member


Date Joined May 2007
Total Posts : 1371
   Posted 8/12/2009 4:02 PM (GMT -7)   
Hi, FibroFaith, and welcome to the Family!! There are a lot of ppl on here that have had this DD since childhood, some for a few yrs, some just recently. I have had this forever. Yeah Me!! I have not been able to tolerate most meds, so I basically take Tylenol for the pain.
 
I know about ppl not taking us seriously w/ Fibro. I was very involved in my church for several decades, this past yr was so hard on me, I had to give notice. I still feel badly, I loved my 'job'. I just knew I couldn't keep up, I stuck it out to the end of the yr. I gave my super enough notice and explained why, she wasn't 'mad', but kept saying 'Maybe having the summer off will make you feel better and you can come back in the fall.' I'm glad that they liked me and trusted me, but I am not able to keep up. I have to do this for me, I don't need more stress.
 
Your comment about ' in another dimension', oh yes, I get that often. I feel like I'm up above, looking down at me and others around me. Dizzy and nauseous, yep, get that, too.  I'm glad your family is accepting, just sorry to hear your son also shares this DD.
 
I don't go to a rheumy, just my pcp. My meds are limited due to sensitivity. As I said, Tylenol. I also try to rest and exercise. I would suggest you check the thread 'Fibro 101' top of the page. Our mods have compiled a lot of helpful info under that 'FLAG'.
 
Glad you have come here, we have a very nice group of ppl on here, kind, caring, helpful. Hope you will stick w/ us, we are all a work in progress. Hope you have a good evening.
 
God bless.  Alice.

FibroFaith
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/12/2009 6:03 PM (GMT -7)   
Thanks for all the welcoming messages. I have researched FM for years but never heard of Malic Acid. I will give it a try. I will also try vit. D. Unfortunatley, I do react to most substances, but its worth the try.

Lynn

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/12/2009 6:10 PM (GMT -7)   
Welcome Lynn,

It is great to have support from family and friends, but it is wonderful to have support
from those who truly understand the illness.

I have fibromyalgia along with other medical issues, so at times I have alot of overlap
of symptoms. My main fibro symptoms when I'm flaring are overwhelming fatigue with
all over muscle burning and achiness. Luckily I don't suffer with migraines like I used too.
My fibro meds are a muscle relaxer(Flexeril) and savella. I do take immunosuppressants
for my other issues.

I try to pace myself according to how I am feeling. It is still difficult not to overdue when
I am having a good day. Finding a balance is important but tricky. I still take one day at
a time. It is easier that way. Like alot of fibromites I have Brain Fog so that makes life
interesting. I still enjoy life, lucky to have a wonderful family and friends.


Glad you found the forum

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


American Woman
Regular Member


Date Joined Jul 2009
Total Posts : 96
   Posted 8/12/2009 6:21 PM (GMT -7)   
Welcome Lynn
I'm also fairly new to this forum, but it sure is helpful in trying to understand this illness. I was diagnosed in March of this year, but as I read on this forum I realize I have had this for a long time. I also can't take much med. because I have bad reactions to them.
The thread Sherrine told you about is so helpful.
The symptoms you talked about are just like what I have. It helps to know that we aren't alone.
Keep posting and you'll see how much help everyone here can give you.
Good Luck to you
American Woman
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