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Jan 22, 2016
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16
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DX FIBRO
Diagnosis
11/2015
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US
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Iowa
The first signs of fibromyalgia came about when I was in college. My arms would be aching after completing blue book tests, and my knees would hurt from climbing stairs all day. I figured this was normal at the time. After about a year or so, however, I found my legs throbbing, my arms throbbing, and I had to sleep with ice packs.

Fast-forward to today: Now, I get sharp pain shooting up and down my limbs, with deep aching in my hips for most of the day. I walk with a cane sometimes, to help with aching limping, and spend most of my nights stretched out on my couch, suffering through the throbbing.

Not all days are like this, thankfully, but it seems to becoming more and more the norm.

I don't really know if I have fibromyalgia, although I do relate to many of the symptoms. I think the specialists kind of gave up and decided to "settle" on this diagnosis. I see a neurologist every few months, and take Trama-dol several times a day. I've read that using pain killers to treat fibromyalgia is very much not recommended, so I'm pretty sure that the doctor who prescribed it in the beginning had assumed that I was fishing for narcotics, and every doctor I've seen after that assumed it was the correct course of action to follow.

I have many other health problems, as well. I tell new nurses and doctors that I've won the genetic liability. Recently, I've been diagnosed with irritable bowel syndrome, which they tell me has a high co-morbidity rate with fibro. I get migraines often. I have GERD. I have costochondritis. PTSD. I shake a lot. I get heat stroke ridiculously easily. My sense of taste and smell has become so sensitive, I sometimes struggle with being with other people, or eating foods I used to love. About two years ago, my sight began to weaken, so now I struggle with reading, and I'm incredibly sensitive to light, preventing me from driving at night when everyone uses their headlights.

I see a therapist, a nurse practitioner for mental health medications, a specialist for digestive disease, a neurologist, as well as my GP. If it weren't for my GP, I probably would have given up a long time ago. I often feel she is the only one who believes me when I tell her about my health problems.

I also have an amazing husband, who has proven himself to be very patient, understanding, and compassionate. Occasionally, he might think I'm exaggerating, but he always realizes in the end that I'm suffering, and that I need his help. He does so much to support me, I'm waiting for him to collapse from exhaustion. Yet, he keeps going. From carrying me into the house, to calming me down and medicating me when I'm having an episode, to kissing my nose when I feel like giving up, he has always been there for me. I thank the fates every day for leading me to such a beautiful soul.

I came here to learn more about fibromyalgia, and to hopefully learn more about my body, and how I can work to prevent it from holding me back. I'm only 25, and I still have so many things on my list to do, that don't involve lying on my couch at night.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Welcome arachnerainbow. It certainly does sound like fibro. I have just about all the symptoms you mention and mine started with legs and arms aching first.

It sounds like you are coping reasonably well considering so many symptoms and how young you are and your husband sounds a sweetheart.

I hope being on here gives you some extra support and understanding...ask away anything you wish. Take Care x
 
Joined
Jan 22, 2016
Messages
16
Reason
DX FIBRO
Diagnosis
11/2015
Country
US
State
Iowa
Thank you, willow! I hope you're right; it would be great to actually know what's going on.

Before I got this diagnosis, my condition was labeled as "Myofascial Chronic Pain". One day, during an appointment with my neurologist, she just said, "Let's start calling it fibromyalgia now," and that was that. When I research fibromyalgia, I often read about the tender points test; I've never gone through that.

My husband is such a sweetheart, I can't think of what I did to deserve him! Sometimes, I feel guilty for him having to deal with my health problems, rather than living the normal life of a twenty-something year old. However, he assures me that it doesn't bother him, and that he will always be there for me.

Thank you again for your warm welcome! I will certainly ask away when I have questions!
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Have you thought about getting some help with the ptsd. It is well researched that there is a link between PTSD and fibromyalgia onset. This is because the central nervous system has been, and continues to be over activated often set to hypervigilant on a regular basis.

This creates permanent changes in our brains' stress response and it's suggested that in turn over sensitises all the bodies functions including pain digestion muscle weakness sensitivity to overload from smells sounds noise etc.

Personally i believe this is how i got fibro although you have to have a genetic predisposition too. My dad has chronic Fatigue /ME and looking back i believe my uncle also had the same as me but it went unrecognised and he was labelled a hypochondriac....which is very sad.

Take Care
 
Joined
Jan 22, 2016
Messages
16
Reason
DX FIBRO
Diagnosis
11/2015
Country
US
State
Iowa
I see a therapist at least once a month, and I take medication for calming me down, and preventing episodes. I'm not sure if there's anything else available for treatment. It certainly does affect the pain I feel. Almost every time during or after an episode or anxiety attack, my entire body becomes sore and fatigued. My GP has told me before that better management of PTSD will improve my condition, and so she keeps track of the treatment and strategies I receive.

My mother has been diagnosed with rheumatoid arthritis and lupus, but she has a lot of symptoms similar to me. She doesn't take care of herself, mostly because her husband refuses to pay for medication, appointments, and transportation. She tells me that she's happier this way, but I'm pretty sure she's trying to convince herself of that, more than she's trying to convince me.

One of my greatest fears is to be labeled as a hypochondriac. Thankfully, that hasn't happened. I can't imagine how your uncle must have suffered, having this condition, and being refused for treatment. When I forget to take my medication, or I take it late, the immense amount of pain is unbearable. Once, I had to go for a few days without it, and I spent most of that time lying in a cold bath, or under fans. I wasn't able to do any sort of tasks, much less live a normal life. I'm sorry to hear that he had to suffer like that.
 
Joined
Jan 22, 2016
Messages
16
Reason
DX FIBRO
Diagnosis
11/2015
Country
US
State
Iowa
What does fibromyalgia look like, down the road? Does it continue to get worse, for the rest of my life? Or does it eventually plateau?

Many of my friends know a cousin or sister-in-law or a friend who has fibro, and I'm always hearing about how fibromyalgia ended their careers. I'm just starting out in mine, and it's already difficult to manage both work and pain, and I really don't want to go on disability.
 

Ruralchick

Senior member
Joined
May 2, 2014
Messages
325
Reason
DX FIBRO
Diagnosis
09/2013
Country
US
State
AZ
Hello arachnerainbow,

Fibro certainly changes your life, usually forever. Some long-term fibro-warriors do report symptoms getting worse with time, but not all. With plenty of research,(yours), comes improved habits--eating #1! Cut out ALL junk food. Junk food can really mess with the pain levels. Hydrate! This helps flush toxins out of your body and add fluid to those poor muscles. Get on a regular sleep schedule, although elusive, training the body to switch off and back on at specified hours helps. Have your vit. D checked--have to ask for the blood test. Most FMers are low in vit D3 and magnesium. Mag/malate seems to be best for us. There are plenty of supplements to try. The trial and error for this and meds can have ya howling. Everyone is so different.

Recently; 2 1/2 weeks ago, I had total knee replacement surgery. The 10 days before surgery the surgeon took me off ALL supplements. I was in agony! Even though I got to keep up with my meds at the same time, I'll never doubt the power of supplements again.

There are many simple things that can add up to relief: get a memory foam mattress topper, the thicker the better, use a heating pad, hot shower or bath for the achiness, don't use blue light electronics an hour before bedtime. (computers, tvs), blue light says it's time for our brain to wake up.

I'm sure there are many things that others can advise. And I'm sorry to hit you with this all at once. At this time I don't have a lot of stamina yet and thought I get on with it.

Please ask what you want, or even just vent, this is the safe place to do it. God bless you on your journey.
 
Joined
Jan 22, 2016
Messages
16
Reason
DX FIBRO
Diagnosis
11/2015
Country
US
State
Iowa
Thank you, Ruralchick! I decided to talk to a nutrition specialist to make a plan for changing my diet. It's going to be difficult, though. I just can't stay away from sugar. I've also already had my vitamin D checked out, and take supplements for it every morning. I haven't heard about the magnesium part, however, so I will mention that to my doctor the next time I see her.

I will be switching medication this summer, and I'm anticipating that it will be awful. Trama-dol has terrible withdrawal effects, and the thought of the pain all coming back... I'm glad teachers get the summer off, so I won't have to miss work for this.

I actually have a memory foam mattress, and two heating pads for the bed. They're so much better than my last bed. I also love soaking in the tub when I'm having especially bad pain. However, I try not to use that too often, as I usually need help from my husband to get out.

Don't worry, you didn't hit me with too much. I appreciate your advice and experience! I'm very glad I found this forum; I hope that I'll be able to improve my condition. Thank you so much!
 

remnant

Senior member
Joined
Mar 11, 2016
Messages
209
Reason
Other
Diagnosis
00/0000
Country
KYA
State
Central
You don't have to fear the future Arachnerainbow. The conditions you have elaborated on point to fibromyalgia. You don't have to rely on chemical medication what with the side effects. Other interventions are available like hot compresses. Scientific research is discovering new frontiers in FM management including the use of medical marijuana. At the end of the day, optimists win hands down. You can lose battles but you will win the war.
 
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