New member from AZ

[DenieceR1987]

Hello all - hope everyone had a great holiday and a relaxing weekend.
New member here, so here it goes...
Just turned 36, married, have a 15 year old daughter, pets, life has been great so far but constantly exposed to stress.

On and off I've been on Adderall for the last couple of years - more on than not, ended up changes doctors several times as I felt like I didn't need it, and other physicians saying that I do and so it began the turmoil. In June this year, we had a home remediation that took several weeks. It was very frustrating, and probably the most stressful event I've ever experienced non-stop. Around this time I went from going to the gym daily, to extreme fatigue, heavy legs, feeling like I'm going to pass out, thirst, excessive peeing. After several trips to the ER, they said I was anemic and iron deficient and my thyroid was out of whack. (No surprise on the iron, because I've been this way throughout life). After visiting several endocrinologists that prematurely placed me on anti-thyroid medication, my health took for the worst and I could not even get out of bed. I was shaky, weak, couldn't shower or eat, high blood pressure and felt like I'm going to pass out. I was abruptly taken off of the thyroid medication, and after a few weeks, my thyroid and hormones settled out. I ended up getting iron infusions, and little by little I started to get better, but I am nowhere near where I used to be. ..

I cannot go through normal household chores without feeling malaise, gradually getting weak again. I constantly have migraines on and off. Sore, stiff muscles, and just achy all over. It gets worse around my menstrual cycle and I have no idea why. Hormones have all been checked, but I do have PCOS. I have been ruled out by endocrinologists, neurologist, cardiologist conducted an echo which came back fine. a Plethora of labs have been done.... ANA, myositis, CRP, ERP, CBC, CMP, B12, Vitamin D, CK, TSH, T4, T3, cortisol, ACTH, aldosene, etc. I've had a thyroid scan done which was fine, and a brain and neck MRI and only showed mild/borderline chiari malformation but was told it shouldn't contribute to my symptoms as it was just an incidental finding. Two rheumatologists have said it looks like Fibromyalgia but did not want to give a definitive answer. Some days I feel OK other days I don't/can't leave the house because I feel scared of getting worse. Stress completely makes it worse.

Doctors don't have a lot of knowledge on Fibromyalgia. I've even wondered if this is some sort of Chronic Fatigue because this all happened around the time we had so much stress and I was on the Adderall medication. I sleep okay at night, but I feel like my old life was stolen from me and it is just a memory. Thank you for allowing me to vent.

I am seeing my 3rd rheumatologist Friday morning and hoping to possibly revisit some adrenal testing. I am out of avenues to check at this point. Life is just passing me by.

 

[BlueBells]

Hi @DenieceR1987

Welcome to the forums. I think all of us vent now and then, it really helps us to "feel listened to" and others to get an idea of what we are up against.

Make sure you wander around the threads, you are sure to find familiar comments and you will feel better just knowing others really 'know' what you are going through.

My head is a bit sideways at the moment, I've been overdoing it, and this is my rest day and head just is mushy.

If you want to reply to a particular member, put the @ symbol before the name, the way I have done yours. They get notified then.

I have a son and daughter, my daughter is your age

Take care

 

[DenieceR1987]

Hi @DenieceR1987

Welcome to the forums. I think all of us vent now and then, it really helps us to "feel listened to" and others to get an idea of what we are up against.

Make sure you wander around the threads, you are sure to find familiar comments and you will feel better just knowing others really 'know' what you are going through.

My head is a bit sideways at the moment, I've been overdoing it, and this is my rest day and head just is mushy.

If you want to reply to a particular member, put the @ symbol before the name, the way I have done yours. They get notified then.

I have a son and daughter, my daughter is your age

Take care

@BlueBells thank you for the warm welcome. It's taken me awhile to come back on here. Eventhough on 12/1 I saw a new Rheumatologist and he thoroughly explained what Fibromyalgia is, possible medication to help reduce some of the symptoms, or possibly skipping meds altogether and going the more natural approach (B Complex, Amino Acids, low-impact exercise etc). It's still hard coming to terms with it. The last 6 months I felt like the medical industry here in AZ has truly put me through the ringer and it's hard to believe anyone. Though, I've had numerous specialists in probably every area, I'm starting to understand that I will probably never be my old self again :-/

I had another small episode start a few days ago - coincidently it was around the day I start my menstrual cycle which (maybe 6 months ago) makes my life a living hell - untreatable headaches, dizziness upon too much activity, overall malaise, and overall just feeling weak in the limbs, and then of course the muscle/joint aches and tender spots become "activated." It never fails. I've had my hormones checked, and other than elevated testosterone, everything seems normal. My husband has been such a trooper, bless his soul. I know this next part should be the least of my worries but even the christmas shopping for me has been just limited to online shopping because I worry about over-exertion at stores. Anyways, enough about that. I'll take your advice and wander around the threads here. I appreciate your response

 

[sunkacola]

Doctors don't have a lot of knowledge on Fibromyalgia. I've even wondered if this is some sort of Chronic Fatigue because this all happened around the time we had so much stress and I was on the Adderall medication. I sleep okay at night, but I feel like my old life was stolen from me and it is just a memory. Thank you for allowing me to vent.

It's true that doctors still don't know a lot. It is a frustrating and challenging disorder, and because there are so many syptoms and they are not consistent across all the people who have fibro it is very hard to pin things down. Plus, not a lot of money is going into research on fibro, at least not yet.

If y ou'd like ideas on how to do y our own discovery of what will help you without medication, check out my post here:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

It's still hard coming to terms with it. The last 6 months I felt like the medical industry here in AZ has truly put me through the ringer and it's hard to believe anyone. Though, I've had numerous specialists in probably every area, I'm starting to understand that I will probably never be my old self again :-/

The medical systems are not better anywhere else, that I know of. If you read enough posts here you will know that people with fibro are put through wringers of various sizes and shapes all over the world. If you have a doctor who even believes you and wants to help then you are way ahead.

As for coming to terms with it......this takes time. Don't be hard on yourself if this takes longer than you want it to. (Actually, don't be hard on yourself for anything!...it doesn't help.) I have had fibro for years, been Moderator on this forum for years, and at times I am still coming to terms with fibromyalgia and how it affects my life. I think this is an ongoing process and you are never really Done with it.

but that's no reason for discouragement, because if you think about it, life is just like that. You are never Done learning, or Done growing, or Done with anything until you are no longer alive, and that is one of the beautiful things about life. There's always more to process and to understand about ourselves and the world we live in.

I have found that an approach of Radical Acceptance is the most helpful. Now, acceptance doesn't mean approval or apathy or acquiescence. It means only that you fully accept that this is the current reality, and no longer waste energy or thought thinking it should be, or wishing it would be, otherwise. the degree to which you can do this is the degree to which you can have inner peace. And in the very next moment you have more energy to devote to doing whatever you can do about it in that moment.

As for being your old self, no you won't be.
But neither will anyone else, and neither would you be if you didn't have fibro. People change, get older, their circumstances change without their approval, they learn a different way to be or to live or to think or feel. This is always happening whether or not we recognize it. Getting something like fibro, like losing a limb or getting cancer or any other life-changing thing points this out to us in a dramatic fashion: there is a sense of BEFORE and AFTER. There is, most likely, something concrete to mourn. I
know that's how it has felt to me. But no matter what, the sun keeps coming up every morning and life goes on until the day it doesn't.

There's not a thing wrong with mourning what we no longer have. I do. And there's no right or wrong way to do it. And while we are doing that we still go about the business of living.
If this forum can be helpful to you, let us know. that is why we are here.

 

[DenieceR1987]

It's true that doctors still don't know a lot. It is a frustrating and challenging disorder, and because there are so many syptoms and they are not consistent across all the people who have fibro it is very hard to pin things down. Plus, not a lot of money is going into research on fibro, at least not yet.

If y ou'd like ideas on how to do y our own discovery of what will help you without medication, check out my post here:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

The medical systems are not better anywhere else, that I know of. If you read enough posts here you will know that people with fibro are put through wringers of various sizes and shapes all over the world. If you have a doctor who even believes you and wants to help then you are way ahead.

As for coming to terms with it......this takes time. Don't be hard on yourself if this takes longer than you want it to. (Actually, don't be hard on yourself for anything!...it doesn't help.) I have had fibro for years, been Moderator on this forum for years, and at times I am still coming to terms with fibromyalgia and how it affects my life. I think this is an ongoing process and you are never really Done with it.

but that's no reason for discouragement, because if you think about it, life is just like that. You are never Done learning, or Done growing, or Done with anything until you are no longer alive, and that is one of the beautiful things about life. There's always more to process and to understand about ourselves and the world we live in.

I have found that an approach of Radical Acceptance is the most helpful. Now, acceptance doesn't mean approval or apathy or acquiescence. It means only that you fully accept that this is the current reality, and no longer waste energy or thought thinking it should be, or wishing it would be, otherwise. the degree to which you can do this is the degree to which you can have inner peace. And in the very next moment you have more energy to devote to doing whatever you can do about it in that moment.

As for being your old self, no you won't be.
But neither will anyone else, and neither would you be if you didn't have fibro. People change, get older, their circumstances change without their approval, they learn a different way to be or to live or to think or feel. This is always happening whether or not we recognize it. Getting something like fibro, like losing a limb or getting cancer or any other life-changing thing points this out to us in a dramatic fashion: there is a sense of BEFORE and AFTER. There is, most likely, something concrete to mourn. I
know that's how it has felt to me. But no matter what, the sun keeps coming up every morning and life goes on until the day it doesn't.

There's not a thing wrong with mourning what we no longer have. I do. And there's no right or wrong way to do it. And while we are doing that we still go about the business of living.
If this forum can be helpful to you, let us know. that is why we are here.

@sunkacola thank you. Sending you a gentle hug. Your post made me very emotional, but in a good way and I needed that.

 

[BlueBells]

Hi @DenieceR1987 and @sunkacola

I have found that an approach of Radical Acceptance is the most helpful. Now, acceptance doesn't mean approval or apathy or acquiescence. It means only that you fully accept that this is the current reality, and no longer waste energy or thought thinking it should be, or wishing it would be, otherwise. the degree to which you can do this is the degree to which you can have inner peace. And in the very next moment you have more energy to devote to doing whatever you can do about it in that moment.

I have been trying As I am so hard to do that since I was diagnosed mid 2019. There are still times of anger at my inability to do a full days work, or sometimes, any work in an entire week!

As I am gradually accepting this is what it is, the anger is abating. I'm learning to let the gremlins have their way and just "go with the flow". I'm finding I actually get more achieved if I give in and just watch TV/movies for a day, and not beat myself up for being unable to do more.




@DenieceR1987 , I'm sure you will find your stress will go down now you've found these forums, I know, for me, simply knowing others have/are "been there, done that" , it really does help.

Hugs to all of you