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tombraun

Member
Joined
Sep 29, 2014
Messages
15
Reason
DX FIBRO
Diagnosis
01/2012
Country
US
State
FL
Hey everyone, I wanted to introduce myself. My name is Tom. I'm in my mid-thirties. I have been struggling for about four years with what I have since determined to be fibromyalgia. For me this manifests itself in pain throughout my back and neck, and also as tiredness and a lack of energy.

It took me quite a while to actually get officially diagnosed. After I learned about fibro and started suspecting I had it, I discovered my GP didn't believe in fibro. I was then sent to a rheumatolgist who didn't think I could have fibro because I'm male. I jumped ship when he decided I must have ankylosing spondilitis (sp?!) and wanted me to get $2000 shots that have side effects like 'cancer'.

Eventually I found a rheumatologist who was supportive, and listened and did not try to diagnose me with exotic diseases. I also saw a sleep specialist which helped a lot. For a year or so my fibro was well managed and I lived normally.

Recently I've been experiencing a new flare-up. This time the pain has mostly been in my neck which then causes tension headaches. I've been having a LOT of headaches. Basically every day. The muscles in the sides of my neck are constantly stiff. Spend too long doing 'the wrong thing' (which could be almost anything) and I can feel the headache coming on. Sometimes I can head it off at the pass by taking some meds or doing something else. Other times the headache goes into full bloom and I'm down for the count until it wears off.

Since I am in a period of transition where I am going part-time contract at one job so I can start up my own consulting and writing business, this constant interruption of headaches and pain is frustrating and discouraging. But I am very blessed to have helpful family and friends.

I live alone. I haven't decided if this is a good or bad thing yet. I am glad I do not have a partner to inflict all this on, but on the other hand someone to help me on bad days would be very nice.

Anyway, I've gone too long without finding a proper support group. So I started Googling and found this forum.

Hello and thanks for reading if you made it this far!
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi Tom! Welcome to the forum! I'm in my late 20's and suffering from this since my late teens. I really feel your pain, I also seem to get what seems to be tension headaches on the back of my head and sometimes one side of my head. I sometimes can feel them behind my ears! During that time both or just one side of my neck is achy, like the muscles themselves are really sore. No idea what is causing it to be honest, guess it must be a spine issue.

I was recently diagnosed with something I don't want to discuss here... I had similar symptoms to yours. Have you had a brain or spine MRI?
 

tombraun

Member
Joined
Sep 29, 2014
Messages
15
Reason
DX FIBRO
Diagnosis
01/2012
Country
US
State
FL
When I first began having problems a few years ago I was MRI'd and cat scanned pretty much from top to bottom. Everything looked good. I was also checked out by a neurologist and given a pass. If there's a silver lining to fibro it is that it won't actually kill you!
 

Lana

Senior member
Joined
Apr 6, 2014
Messages
223
Reason
DX FIBRO
Diagnosis
05/2012
Country
CA
State
ON
Hi Tom and welcome, I have neck pain but I don't get headaches, my neck is so tight the muscles just seem to be locked. I empathize with you having headaches, that must be terrible! Well I'm glad you found this site it is a great site for information and people here really help one another. I hope you find answers here from members with headaches. Best of luck Tom and again welcome to this Forum
 
Joined
Sep 3, 2014
Messages
24
Reason
DX FIBRO
Diagnosis
09/1990
Country
US
State
CA
Hi Tom, having Fm is always a learning curve. There are meds to help,with the inflammation and pain. Exercises from the PT That help"and learning UR limitations. Do things in shorter time frames and rests in between. Lots of water. I found that dehydration can exacerbate FM pain. Take time for massage therapy, hot tubs before bed to relax muscles and muscles relaxers as well as a good nights rest, very important.

This is when the cold weather starts and I feel like I need a can of oil to unlock my joints when I wake. F u have time to set UR alarm a vit earlier before rising in the am I take a couple of Tylenol to take the edge off ..then after 20 minutes or so I'm can get up easier.

There are a lot of good web site too to help with the different treatments for FM. EDS is also a primary problem for me. So look around find what works for you and don't give up. Stay with us ..

Take care..
 

Lauren D

New member
Joined
Oct 11, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
05/2009
Country
RSA
State
Kwa-Zulu Natal
Hi Tom. I'm 33 and suffer from your exact symptoms. I just joined this forum today. I have found Yoga and Pilates do help my pain to some extent but not so much with the headaches. For those I take pain killers, which I know I take too often but find it unbeatable to not take them. In addition to FM, I have scoliosis, arthritis, spondylosis as well as an extra cervical rib. I uses Transact plasters on my upper back to help too.

I was relieved when I was diagnosed with FM because I thought I was going crazy and it was all in my head before that! I think joining a forum will help us all to feel supported by other sufferers.

Be kind to yourself
 
Joined
Sep 3, 2014
Messages
24
Reason
DX FIBRO
Diagnosis
09/1990
Country
US
State
CA
Hello Tom..

Glad your here. This forum has a lot of helpful emotional support as well as suggestions how to deal with a flare physically and much more.

FM has stopped many of us in our tracks at times. But I always try to remember that most of my flares are temporary and take the I me to treat them right away.

Sometime just a bit of UR med of choice and a day or two of rest can help pass a flare much quicker.
I've learned to not ignore the pain it just causes a worse flare. If I catch my flare at the beginning start treatment quickly the flare time is generally deminished in severity and length.

Winter is coming take extra precautions to stay warm. Extra clothing cold weather always sets off a flare for me if I don't dress warmly. I swear by my microwave body wrap packs for winter. There like little mini heaters and always work to stave off a cold chill while out and about.stopsthe sever aches.
 

Eff fibro

Active member
Joined
Oct 13, 2014
Messages
38
Reason
Undiagnosed
Diagnosis
10/2014
Country
US
State
MA
Hi Tom, thanks for sharing! I'm 31 female and was diagnosed with fibro a month ago. First I want to touch on the living alone thing, I "live with" my boyfriend part time (at least half the week) and it has its ups and downs. Its probably best while I digest and understand what fibro means for me, as I worry about being a burden, hindering my boyfriend from doing the active things he wants. Some days I love going out with him but I worry that days I just need to stay in will start to wear on him. That not doing things together will draw us apart in a way. We share a once in a lifetime love and I know its unconditional, this is a fear that I am putting on myself, but its still scary. And there are days I know I'm a burden... when I lay in bed crying because I want so bad to get up and brush my teeth but the thought of walking all the way across the house to do so is more than I can handle. My Marine is a good man and brought me my toothbrush, but it almost makes me feel worse when he takes care of me. But all in all, the benefits of having him here for me physically and emotionally on bad days outweighs the desire to "rid him" of my burden. My best friend and my cousin both married women with fibro and they're as much in love as anyone can be, it just ends up being that they take turns washing one anothers hands.

Back from the love tangent, sorry. I also have chronic muscle tension in my neck and shoulders (I feel it in my lats but I'm told its in the muscles that run up my neck). I've been doing PT for almost a month and taking muscle relaxers once in a while, those both provide slight temporary relief, but I strongly believe in the long run the PT will be a huge help. There's a study in Boston on the effects of Tai Chi on fibro. I also bought a heat/ice pack that's designed to sit over the shoulders and up the neck, microwave for 2 mins or freeze for half hour, it's my best friend. The very best thing is the natural stuff- stretch, heat/ice, massage, and don't overuse that area. Best of luck and remember, you are not alone!
 

tombraun

Member
Joined
Sep 29, 2014
Messages
15
Reason
DX FIBRO
Diagnosis
01/2012
Country
US
State
FL
Thanks everyone, you're very kind!

I am hoping this flare-up will pass before too long... how long does everyone's flare-ups usually last?
 
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