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tripphm84

New member
Joined
Jun 24, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
03/2016
Country
US
State
South Carolina
I was recently diagnosed with FM back in March. This has been about a 3 year process and
I'm still not convinced. Three years ago I started having some pain and discomfort in the front and back of neck. Soon after I started having back spasms and they would cause me to be on the couch for a day or two. After this the chronic pain started . Let me also say up front that I have dealt with Chronic Depression, Anxiety , panic attacks and stress my entire life. I was diagnosed with turrets syndrome at 7 but my symptoms of that have been suppressed since about age 16. I have had 6 concussions and fractured my skull and shattering my orbital cavity. I am past all of this at age 31 now with two wonderful girls and a great wife. Other symptoms came and went over a couple of years but at the end of last year things stared to get a lot worse. On a daily basis now my pain level is usually a 7 or 8 for my whole body. Often I am so weak I cant move or lift my arms. Headaches , Leg numbness, I lose my balance all the time, cant think and lose my train of thought. Mainly my quality of life is not that of a 31 year old dad and I want it back. Ive seen Neurologist, Rheumatologist, and now I'm going to see a fibro specialist. The diagnosis explains all of the weird symptoms and thing happening the last 3 years but things are just horrible now days. Still though I'm skeptical because of there being no definitive test. They have done every other test aka blood work, nerve test, etc. Am I crazy or should I just accept the FM. I try to exercise but It hurts so bad. I feel so alone because my wife , family and friends don't really understand and it's hard to explain too. Any thoughts?

Please excuse any typos. today is a bad day!!!
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome. Your story is like a million others.its so hard to except this illness.they worse part is feeling lonely. But here u have ppl who will care.
The fact you have had every test going does make it sound like fibro.
I no when I was told ,I was so sure my dr was wrong I had even more tests done.this went on for months before it sunk in.since then I've learn to except it and more on. I have three grown children 20 18 14. And a 4 year old. Do I hurt hell yes.can I keep up yes. How .i plan what I can do and what I can't.
Pace yourself.i Understand being a man means you have to work and look after your family.but this illness isn't going away.
The first thing to do is get it in your head you have fibro. Show your wife this site let her read some storys .you are not the only man on the site.
This illness can be brought on by having a very stressful life.and it seems you have.
It won't kill you but it's going to be with you always. Some say it can go ,I've never meet one yet .who wasn't scamming .my pain is worse in my shoulders but it moves .in a few weeks it could be my legs. And some days it's everywhere like having a toothache all over.
So pls stop feeling stupid.your not.and embarrassed pfff. Take a strong mind to stand up and say I have fibro.
So stick around and pls ask anything .
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
I've found that by accepting my diagnosis I can put my energy toward learning about my condition and how to manage it. Forgetmenot is right - pacing is very important.

"Breaking through the Fibro Fog" by Kevin White is a book that does a good job summarizing the science behind fibromyalgia. He is a doctor who treats and researches fibromyalgia.

Explaining to the people around you can take time. This condition is tough to understand even when you are the one experiencing it.
 

tripphm84

New member
Joined
Jun 24, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
03/2016
Country
US
State
South Carolina
Thanks for the feedback. I was having a really hard time finding a board that was active. I try to explain to my wife how I feel but its just hard for people to understand. I am just feeling better today after the worst flare up I have had to date. It lasted about 3 days. I had more symptoms all together than I've had before and it was just horrible. I thought I was dying. I'm trying really hard to be active and pace myself but it all hurts so bad no matter what I do. I've changed my diet and am still working on that. I just want my quality of life back. I'm a 31 year old dad that feels 80. What helps?
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
Do what you need to to get good quality sleep. Not having enough sleep will make everything worse. A lot of take medications or supplements to help us sleep through the night. Do not short change yourself :)

Exercise helps a lot of us, but you have to be careful not to overdo it. I keep to mild exercises like walking, stationary bike and swimming. I find that it is best to avoid anaerobic activities, which is a bummer because I used to play soccer. Sometimes I can only do a few minutes at a time, but even that helps.

Sometimes I get overtired during the day and I just need to sit and do nothing for 5 or 10 minutes. I have more endurance if I respect this feeling.

Avoid stress as much as possible. I had to end some toxic relationships that got worse after my diagnosis. Invest in the positive relationships around you - they will sustain you.

Another thing I find helpful is taking deep breaths. It sounds too simple to work but it really does help. Breathing from the diaphragm helps your body calm down.

If there is one part of your body that is more prone to pain, you might look for ergonomic solutions to avoid stressing it. For me it is my hands. I need special keyboard and mouse when I use the computer.

Medications can help, but they are kind of hit and miss. I am getting by on a few low dose antidepressants and flexeril. It is really important to take my medications and supplements regularly. I was having problems with forgetting to take them (I blame fibro fog). I got a pill box so I could see whether I had remembered or not.

For supplements, a lot of us benefit from vitamin D, magnesium, omega 3, resveritrol, CoQ10, and some others I am probably forgetting. I have found that resveritrol plus rice bran oil is effective for me.

There are a lot of good books to give you an overview. "The First Year with Fibromyalgia" has been highly recommended. I just got "The Fibro Manual". I've just started reading it, but it looks like it will be pretty good.

Hope this helps!
 
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Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
What meds are u taking if any ?. I have amitripoline 50mg for nerve pain and helps me sleep.im on tramadol and gabbpentin. I must say gabbpentin has helped a lot.
 

Dom333

Member
Joined
Mar 13, 2016
Messages
19
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Ny
I feel the same way. I've experienced symptoms since I was 13 and am now 28 years old. It has gotten to the point where I doubt if any of this is real. I finally got a diagnosis after 14 years and went to this pain specialist that apparently doesnt believe in fibro, which has me questioning it again. It sucks and is very isolating, but youre not alone. This board does help! Even if you need to ***** for a little. I've been trying to get out of bed for 2 hours and was feeling suicidal from the years of this goddamn pain/anxiety/fatigue/depression, but i feel much better after reading amd.writing. Stay active on the thread! Sometimes all you need is others who understand it! Good luck man and stay strong!
 

Dom333

Member
Joined
Mar 13, 2016
Messages
19
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Ny
I wrote b i tch above, i dont know why they blocked it out.
 

tripphm84

New member
Joined
Jun 24, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
03/2016
Country
US
State
South Carolina
my computer wont let me see all of the post, only the first 3. Does anyone know how I can see the rest?
 

tripphm84

New member
Joined
Jun 24, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
03/2016
Country
US
State
South Carolina
I just went through my worst ever flare for the past 5 days. I didn't think it would ever end. Thanks for all the replies! It is nice to talk with people who do know what I'm going through. My wife is very supportive but she still just cant understand. The medications I'm taking are gababenton, baclfon, welbutrine, klonipin, and tezapame for sleep. Sorry for any miss spellings. I have found a FM specialist about an hour away in Charleston so I'm excited to see him on the 1st of August. I will keep posting and share about my experience with him. Thanks
 
Joined
Jul 3, 2016
Messages
24
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
LA
My brother was diagnosed with cancer earlier this year and he has a lot of same symptoms I do. It hit him suddenly and the adjustment has been difficult. I have every confidence that he will beat this, I won't beat fibro. But it took so many years for me to get someone to listen and get diagnosed so that I could finally get treatment. I had to fight to be believed. In the last few years, I even have complete strangers understand at least enough to give me support. It is like one of those horror movies where the main character is seeing ghosts and has been treated like their crazy their entire life until finally at yhe age of 39, someone else sees them too. Finally! Of course half my life had gone by.
 
Joined
Jul 3, 2016
Messages
24
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
LA
I found the best way to explain it is that it is like being deep under water. Just about everyone knows how difficult it is to move when u are in a pool. But u also have the feeling of pressure like u are being crushed. Then u add the tired weak and it like something sharp is being stabbed into u in thousands of places at once. That was the explanation that finally got my family to get it
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
That is a very precise description....my fibro symptoms used to be changeable but now they are stuck exactly like that... heavy limbs and core , crushing pressure and burning stabbing pain all over that increases with any use at all and keeps you awake at night.

My partner has only just realized after 9 years just what i'm going through despite all my explanations.

I finally found lots of info on the web last year and videos and this site and copied some into emails to him.

He said reading it seemed different to me explaining...which i think really is just evidence that we are all up against singular peoples explanations seem exaggerations to normal folk but when they see we all use the same words and say the same things the penny finally drops!

There are three letters under a post 'Giving in to this condition' back in April that might help explain too.'
 

SissyGirl2

New member
Joined
Jul 4, 2016
Messages
2
Reason
Undiagnosed
Diagnosis
01/2012
Country
US
State
WA
Hi All, I am new here, but not to Fibro (if it's really fibro.) I was diagnosed in 2012 and have been on disability since early 2013. I am looking to make major changes in my life. I have PTSD due to childhood issues; I started menopause the same time my thyroid blew up and the fibro kicked in. I have no life here and I would like to move far away from what family I have left. They still don't believe that there is anything wrong with me and I am tired of being further abused by them. I tried Lyrica, but it made me cry all day. I am on Cymbalta, tramadol, trazodone, flexeril, Synthoid, Temazapan and I take a number of supplements. I can relate to feeling so alone all the time. I find that if I keep moving most of the day, I have a lot less pain and sleep better. I haven't found anything for the fibro fog, but I want to start working on myself, and not doing everything for everyone else. When I was first diagnosed I already had a good idea that I had "something" and just putting a name to it helped alot. I read medical journals about fibro, but none of the 15+ doctors and specialist ever tried to find out truly what is wrong with me. I know my thyroid hormones are all over the place, but getting something done has been impossible. I did take gabapentin or neurotin for 5 years and then I started passing out, blackouts. I had temporary paralysis and I took myself off of it over a 4 month period. I looking to move somewhere that has little humidy, not too cold and warm temperature close to year around. I also want to continue gardening and have another koi pond. I was in a chronic pain support group for 3 years, then the group dissolved for numerous reasons. The support was awesome.
 

tripphm84

New member
Joined
Jun 24, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
03/2016
Country
US
State
South Carolina
Its been a great week. I have been feeling better but my wife says now she doesn't know if she can stay with me with my FM. She can't handle it. We are trying to work it out and we have two small children. I don't think she has been happy with me for a while because of all my aches and pains and she's just not in love with me anymore I guess. We are trying therapy and hopefully that will go well but I'm at a loss right now and my life feels like its falling apart with everything going on. What the hell do I do?
Thanks for all the reply's also.
 
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