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mnfun2bme

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Joined
May 24, 2013
Messages
4
Diagnosis
05/2013
Country
US
State
MN
Hi all,
So glad to have support. I have been reading and I am thankful for this forum.

I've been feeling crappy for roughly two years. It first came in the form of major digestion issues - I'd burp all the time and got no relief... just burp, burp, burp. I had seen many docs with regard to that and have had both endoscopy and colonoscopy which came back without issues. I decided to just do my best and get through it... even though my stomach hurt all the time and I felt completely bloated and 9 months pregnant most of the time. (thankfully I wasn't).

After the issues with that came my joint pains and muscle pains and just overall feeling of being tired all the time. I remember telling girlfriends that "I just don't feel right." Someone referred me to a doctor who ran $2600 worth of blood tests on everything from hormone levels, thyroid, vitamin d, you name it. It was then that they discovered that I was very hypothyroid (the general test for thyroid didn't necessarily show what the full testing did). It was important to see the FULL test. I was also low on vitamin D even though the testing was done right after 10 days in the Caribbean. My hormone levels were okay. I've been on thyroid medicine since January and they recently upped the dosage after another test reflected I was still low.

I thought the thyroid medicine would be the answer to why I'd been feeling so sluggish... I thought I'd go on that and everything would get better. My regular doc was curious with the history of autoimmue in my family so he ran a "ana" test. I tested positive (this is the bloodtest for lupus). He referred me to a rheumatologist. I saw the rheumatologist and he said that it's not lupus, that I have fibromyalgia. ALthough I don't really know the difference between the two as these two words were never in my vocabulary until very recently. Everyone celebrated when they found out it wasn't lupus..... everyone but ME. It's not that I would rather have one over the other... but I don't want EITHER ONE. It's tough to get excited about how I ONLY have fibromyalgia. I feel like crap!

The rheumatologist sent me back to my doctor to manage the medication. The doc put me on a very low level of amitriptyline (an antidepressant) I'm taking 30 mg before bed each night and I think it is helping me sleep better. THINK is the key word. I am continually hearing from people how tired I look and how I don't sound good from relatives that live far away. Most recently, my voice is turning very hoarse.... is this common for fibromyalgia? Sometimes my voice goes completely out. It's somewhat embarrasing when it happens at work. At first I was wondering if it was only brought on with anxiety.... (which I've not had to deal with in the past)..... but I'm just not sure.

I'm having dizzy spells and don't quite seem like I'm all here. I'm doing a job that would have been a breeze for me in years past.... but for some reason, it seems more challenging. I'm only 47... I just feel like I'm kind of falling apart.

Is this voice thing common? Is it a characteristic of fibro? I called my doc today and he stated that it's not and that he thinks I have some virus and give it a couple weeks. I don't believe that's the case.... but what do I know? Lately? It doesn't feel like much.

You know, this diagnosis of fibromyalgia feels much like the diagnosis of autism I faced 20 years ago when my son was diagnosed. Fibromyalgia, like autism, is a diagnosis that seems hugely vast in its appearance and characteristics and there is not one course of treatment that seems to work for people. I did this when we best the doors of autism down.... and I'm not sure I have the energy to sort through all the crap for this diagnosis. I'm sorry to sound so down.... but I feel sad about this. I want the woman back who used to go to boot camp, who was strong, who could lift heavy weights every day and ride 20 miles on her bike in an hour.

My emotions are clearly all over the place and as I sit here typing with tears running down my face, I want to get hold of the emotions and be strong. I don't want my family to have to deal with this either. Is it common to not be in control of emotions? Is it all part of it?

Any advice would be welcome. I think I'll call a friend. Thanks for listening.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
First off welcome to the forum. It sounds like you have been put through the wringer with every test known to mankind, and in the end told you have fibro. The thyroid problem can cause some of the symptoms your having, and the high ANA test usually means lupus, which is worse than fibro, because it can cause life-threating illness. Glad to hear that the doctor ruled it out. But now your stuck with fibro.

If you have read any of my other entries, I have mentioned weird symptoms that come and go, without reason. This loss of voice thing is one of them. I have had it happen for no known reason. No cold or virus. I had throat cultures done, as well as, the endoscopy, due to trouble swallowing as well. Was told everything was normal. Usually these odd symptoms last long enough to send us running to our doctors for answers, which usually means lots of expenive tests that prove nothing and then for no reason they disappear into thin air. It seems at times someone is playing tricks on us and getting a hardy laugh from our fear.

I know your at the stage where you want to know why. I was there so many times. I spend so much money looking for answers that never appeared. And I feel your pain and loss, in wanting your life back the way it was. Yet knowing after reading on this site the chances of it happening are few and far between. But if you stay we will try to provide support and give you room to vent and moan. You can share in the pain topics and the humor and the day-to-day stuff, etc... We understand you and it is always easier when you have folks who suffer the same as you and can provide a listening ear. I hope you come back often. :)
 

mnfun2bme

New member
Joined
May 24, 2013
Messages
4
Diagnosis
05/2013
Country
US
State
MN
Thanks for writing. I appreciate the welcome. 1sweed, thank you for your kind words. I'm glad you chose to write to me. You said something that really hit home for me. You mentioned that this is a place to come to share the humor. You know, I've been so serious since this diagnosis but I'm reminded of the early 90's when my son was diagnosed with autism. My best friends to this day were the same people who could find humor in the autism so many years ago. To many, this may sound like a twisted mental state we were in..... but there were so many funny "autism - like" things that would happen and two moms (like me) could find humor at times and needed to share/vent. Although our kids are now grown and we live in various parts of the country, we are best friends to this day and we travel together every winter to somewhere warm.

It was this past January that I sat with them on our deck in St. John, USVI and told them that something is definitely wrong with me. I had gotten over 35 trigger point injections in my back within two days of trying to travel. My neck and back hurt so bad I wasn't sure I would be able to travel. Thankfully, the injections were enough to get me on the plane. Little did I know that I believe now that was the beginning to all this. I had one nothing to injure my back but every muscle in my back was seized up. I was in horrible pain. I will try to remember to keep my humor because just like the autism diagnosis from so many years ago, there was a process that I worked through and no child had the same autism... each child diagnosed was a bit different.

Back then, I remember searching for a child that was exactly like Thomas (my son) someone who had all the same characteristics. if I couldn't find a similar child, maybe it really wasn't autism. Maybe that's what I've been doing here. Thinking that if anything were different maybe it wasn't really FM.

It's still new... the diagnosis is less than two weeks old. Today is a good day. My fingers are moving, my arms don't hurt and as of 8:23am, I'm not tired yet. I think these are the times when I need to research how to attack this. My mind is clear this morning. I feel well rested. I think I'll click on the resource section and see what I can find.

Thanks to all for your welcome.... particularly 1sweed for saying just the right things. I appreciate you.

Sincerely,
Lisa
 

avonsong

New member
Joined
May 23, 2013
Messages
3
Diagnosis
00/0000
Country
UK
State
Warwickshire
It sounds like you have had some great tests done which is a really important part of recovery and this is how to treat the illness from a physical perspective. One of the things you need to ask yourself now is about any stress you have been under. We often get these numerous scary symptoms because the stress we have been under starts to affect us physically and the symptoms are like a domino effect. Sounds like you have done a great job at sorting the physical so maybe you could now think about the emotional. In my experience both aspects are important :)
 
Joined
May 27, 2013
Messages
20
Diagnosis
05/2013
Country
US
State
Pennsylvania
Sigh... I have many similar symptoms, and I was just diagnosed last Tuesday. I've been through numerous MRIs, a CT, X-rays, more blood work than I can explain, a spinal tap (that went badly and my spinal fluid wouldn't stop leaking, so I vomited and was in excruciating pain for 12 days and then had a blood patch)... I've been to my primary, psychiatrist, infectious disease specialist, rheumatologist, neurologist, hematologist, and next week I see a neurosurgeon about some weird stuff they found in my spine on the MRI.

I get weird sensations (cold, tingling, numb), random pain everywhere, I black out, awful fibro fog (can't focus and trouble remembering things), digestive issues (TMI, but large bits of undigested food in my poo on a daily/every other day basis and sometimes blood), dizziness..... I feel like such a mess. I hope the antidepressant helps your symptoms.

1sweed, I know you probably didn't mean it this way, but what you said was really disheartening.... I absolutely *refuse* to accept that there will be things that I just can't do. Fibro isn't deadly. It's terrible and ****ing annoying, but it's not disfiguring or degenerative or autoimmune. I will suck it up and do what I do. It's incredibly hard and right now I'm frustrated and just not feeling right and in pain, but I'm not giving in and I don't think I have to. I'm just a mess.... doing aquatic therapy 2x a week, I start on Friday. I'm so impatient. I wish I could go every day so I can get a handle on this crap and get back to work... if I'm not back to work by 6/25 I lose my job, and that scares me more than anything at this point :/
 
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