Young and already done

kaida

New member
Joined
May 28, 2021
Messages
1
Reason
DX FIBRO
Diagnosis
06/2016
Country
US
State
GA
Hello all. I am currently 22 and was diagnosed with fibromyalgia when I was 17, and I decided to post on this forum because I feel completely alone right now and I don't know anyone I can talk to about all of this. I hate complaining about things that I can't seem to change, but man oh man do I need to complain and get this negativity out somehow.
I have a few health issues that I've known about most of my life. I was diagnosed with PCOS when I was 12; my main symptoms were always coarse/dark leg hair and very irregular menstruation cycles. I was put on Depo Provera injections when I was 15 which stopped the horrendous bleeding I was having, and I only recently switched to an oral progesterone contraceptive about two months ago in preparation for trying to conceive. With PCOS came diabetes, and though I have never been overweight, I have been unable to maintain normal glucose levels without the help of Metformin.
I was also born with crooked hips. My left SI joint sits about 4cm above and 1cm forward from my right SI joint. Doctors noticed this immediately when I was born, and suggested corrective surgery for it when I was three years old. My parents declined the operation because I was already walking around and they didn't think it was necessary to make me undergo such extreme recovery at such a young age. I've always been a clumsy person, tripping over nothing all the time, but this hip imbalance didn't really start causing discomfort for me until about I was 15 years old or so.
In high school, I was a very active and involved member of my JROTC organization. I held several officer positions, was a part of drill team, color guard, sabre team, and regularly did physical training with the marine recruiters twice a week. I was in absolutely great shape and I ate the healthiest I probably ever had in my life. After about two years of this, I completely crashed in such an unexpected way. I couldn't run laps without having to fall out of the group because of the pain in my hips, knees, and ankles. Any activity with jumping was excruciatingly painful for my hips. I used to compete with guys in my class for push-ups and pull-ups, but even that left me with arms and shoulders that were so sore it was difficult to lay down in bed at night. I noticed that I was significantly more tired all of the time, even after full 8 - 9 hour nights of sleep. I started sleeping through my alarms and when I would wake up incredibly late, I would feel so sick and nauseated that I would need at least half an hour in the bathroom to just start feeling normal again to start my day. I started lacking motivation and energy to do basic things that were always easy for me to do before.
These changes were so sudden and so profoundly different from what my normal was, I scheduled an emergency wellness appointment at my doctor's office. We talked about my symptoms, when they started, how they were affecting me, and then my doctor started poking me in a bunch of different places. Each place she poked me felt like she was jabbing me with a sharp stick. They ordered me to give some blood for tests (I can't remember everything they tested, but I remember that they were looking for Rheumatoid Arthritis and that came back negative), and when the results came back they called me and told me that they wanted me to see a neurologist about the possibility of MS. I scheduled this appointment and when I went into the office and answered some questions, the specialist informed me that he was confident that I did not have MS and there would be no need for any tests. He sent his opinion back to my primary doctor.
After one more round of blood tests and another office visit of answering questions, my doctor diagnosed me with fibromyalgia. She explained to me that it was a "diagnosis of elimination", and that the treatment for such a condition was antidepressants, exercise, and a healthy diet and lifestyle. She emphasized that keeping stress low was important.
I immediately did not like this diagnosis and rejected it from the outset. To me, it felt like the doctor was saying "We have no idea what's wrong with you or how to help you" and it bothered me immensely. I was 17 and was already living a very healthy life, so what the heck happened to me? At this same time, I was dealing with other big life events that definitely amped up stress and left me very prone to depression and panic attacks. Over the course of three years, I tried several medications for the treatment of fibromyalgia and depression, including Lyrica, Gabapentin, Pregabalin, Zoloft, Cymbalta, Savella, Amitriptyline, Prozac, and Celexa. I was taken off of every single one of them after negative side effects (or at least, my perception of bad side effects). At one point, I was taking over 13 medications a day including Klonopin, and I decided that enough was enough. I had been seeing multiple specialists throughout these three years to get other opinions, hoping for some other diagnoses that made sense and had a straightforward treatment plan. It never came; every specialist and doctor that I went to see would announce after heavy tests that the culprit was fibromyalgia. I was tired of wasting my money on doctor visits. The pain and fatigue were still getting worse, and I was feeling out-of-it like I was in a daze taking all of those medications. I decided I needed a clean start.
This "clean start" was about two years ago. I completely stopped or weened myself off of all medications. I went on a keto diet for a year in an attempt to improve my glucose levels and to get back into a healthy dieting habit. I started doing yoga and stretching for an hour or more every day to try and relieve some pain and tension in my joints and muscles. I started going on walks regularly (I work in tech, staring at a computer screen on my butt every day and I realized I needed some sun). After about a year, I quit the keto diet because my glucose was still too high even with restricting myself to 25g of carbs each day. I started to slowly pick up the medications that I thought were helpful to me, and I am still taking them now: Metformin, spironolactone, cyclobenzaprine, Nortriptyline, and my progesterone birth control pill as of two months ago. I started incorporating strength training workouts into my daily life, so that I am now doing both yoga/mobility practice and strength training about 4-5 per week, depending on how I feel physically. I drink at least a gallon of water a day. In the past two years, I have become "born again" and have developed a relationship with God that has totally eradicated my anxiety and panic attacks and has given me more confidence and peace with myself. My diet has not been as good as it could be since I have stopped keto, but I am planning another elimination diet soon to remove gluten and then later on maybe grains to see how that makes me feel.
Ultimately now I just feel stuck. Five years later and I am still left here frustrated and struggling. Fatigue is definitely my largest problem. I am so exhausted all of the time that I constantly oversleep and am late to work; I feel as if I am about to collapse from fatigue after only 8 hours of being awake. My body aches so much that it feels like all of my energy just gets sucked out from trying to tolerate the discomfort. Every morning and throughout the day I feel sick and nauseated; I often struggle to eat enough calories throughout the day to maintain my weight and muscle because I often feel repulsed by food. My stomach constantly feels bloated like a balloon as if I had just stuffed my face at Thanksgiving, when in reality I haven't eaten much at all, if anything, for the day.
I am young, and I have so many things that I like and want to do, so many goals that I want to fight to reach, but I feel so hopeless now. How am I supposed to keep going on like this? If I can barely manage my daily life as it is now, how on earth am I going to be able to keep up with my children? My boyfriend and I both want to start trying soon because we want to have our kids while we are young, and I just have no idea how I am going to do it. We're looking at buying a house out in the country so that we can start farming and raising animals, which I desperately want to do. How am I supposed to handle that kind of work when I can barely handle my desk job? I am tired of this, really beyond tired of this. I have accepted the fact that I will never just be "normal" and that I will be dealing with something unpleasant for the rest of my life, but I'm looking for a victory here. I just want one thing to get better, and I wish that one thing would be my fatigue. I wish I at least had the energy to deal with my discomfort without the thought of sleep constantly weighing my mind and body down. I wish I actually had the energy levels for someone my age so that I could properly work on my goals and ambitions in life. I just want one small win for encouragement; something to prove to myself that I won't just be "getting worse" for the rest of my life. And my goodness, I wish it could be as easy and just snapping my fingers and telling myself "Just suck it up and move on", but it isn't. At this point, I am falling back into the depression that I had done so well to overcome. I don't want to succumb to my negativity again. I don't want to lose hope in my future. I don't want to fail myself or my family. My boyfriend, my parents, my friends, and my future children deserve the very best out of me, and I want to be the very best that I can for them. I need some help, and I have no idea where to find it anymore. My willpower is starting to deplete quicker than my energy, and my motivation gets dashed out with thoughts like "Ha, you can't even hear your alarm in the morning, how are you going to do that?" Each night is a routine of moaning and groaning about my achiness that I can't seem to ignore anymore. Each morning starts out worse than the day before, and it is becoming extremely difficult to take care of myself the way I should be. All I want to do lately is to curl up in a ball, cry, and sleep, and this fact in itself makes me more frustrated and angry. I never want to be like this, yet I can't seem to escape from it either. I know that there are many people who have it much, much worse than I do, and that makes me feel even worse for not just "sucking it up" and dealing with it. I just need some help, because I have absolutely no idea how to cope with this anymore.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,531
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hello kaida,

You have already been through a lot and there may not be a great deal I can tell you that you don't already know. I do recommend you read my post pinned at the top of the General forum, as it has many suggestions for things you can do to help yourself. I realize from your post that you have already done some of them.

I only have a few pieces of advice for you, to take or leave as you see fit.

1) It seems to me that if you go ahead and buy land and start a farm you will be asking for trouble if not absolute disaster. I don't know if either you or your boyfriend grew up on a farm or not, but if you didn't you may not know how incredibly difficult such an undertaking is, how many things can go badly wrong, (and they do, all the time) and how much work it is. This is not something that a person without extensive experience is likely to succeed in doing without a lot of failures and setbacks along the way, because it is far more complex than it appears to be, and you have to be very knowledgeable about many things. Just taking care of a few chickens and keeping them healthy and happy is far more complicated than it looks. And if you don't know a huge amount before you start, those setbacks will be very costly in money and also, potentially, in animal life.

It generally takes 2 people working long days to keep such an enterprise going if you have crops or a large garden and animals to care for. You cannot do it if you are not strong and very resilient both physically and mentally. (This is the voice of experience talking here). And there's a saying: "How do you make a small fortune with a farm or a ranch? Start with a very, very large fortune. "

You certainly can't run a farm or raise animals and look after property and keep working a regular job at the same time, and you absolutely cannot do it if you are having serious pain and fatigue issues on a daily basis, and you say they are getting worse. Not to mention that such an enterprise as a farm is actually quite stressful, and that is very likely in itself to exacerbate your problems. I strongly recommend that you do not enter into this at this time. It would be exactly the opposite of what you need to do for yourself. Farming, even on a small scale, is actually one of the most stressful things a person can attempt to do, because it is a 24 hour responsibility and things go wrong all the time.

2) Ditto with starting a family. Unless you can get a handle on what is going on with you, there's simply not enough of you to spread it any thinner, and you will not be able to give what a child needs.

3) I do recommend that you try to get a really good therapist. NOT that you are causing any of this, NOT that it is in your head! But because you need a place where you can go and be heard and vent and get help, and you can come here any time for that, but we are not there for you in person. And of course, you don't want to dump it all on your boyfriend either, and probably you try not to do that. A good therapist may be able to help by just being there to listen.

Finally, please believe that it will not necessarily be this bad for the rest of your life. If you keep trying things, and do not give up, eventually something will help. I fully understand the fatigue and how incredibly difficult it is to keep going, let along keep trying things, but there's just no option. Different diets, different exercises, and on and on.

I also fully understand the need for a victory even if small. I have had the same thing. What I did was adjust all my thinking so that the tiniest little thing could be viewed as a victory. It started out with really small things like stretching for 3 minutes. I would tell myself what a good job I did. And now it is much bigger things, like working on my land for an hour or even two. That's nothing compared to what I used to do: 5 to 7 hours a day of heavy physical work, day after day. But what I started doing is cheerleading myself for every little thing. Telling myself that even 3 minutes of stretching was a victory! And it is, if compared to doing nothing!

As I cheered myself along, told myself I was doing a great job, each little thing became easier to do each day. I know it sounds hokey to tell yourself you've done a magnificent job and good for you for doing the dishes. Stupid, right? Wrong. It seriously helps. As I went along, each day that helped me to feel motivated to try something the next day. If it were a really bad day and all I did was a little dusting or something, I still cheered for myself just as much. I sort of treated myself like a little dog or a child who really needed praise and encouragement, and I lavished it on myself for doing every little thing.

I really think that doing that, along with finding through lots and lots of experimenting what things work best for me to manage the pain and the fatigue, has made a huge difference in my life. Several years ago I could hardly get out of bed. Now I live a life that, while being much diminished from how I used to be, is at least something I can live with and I find ways of enjoying it. I also struggle with depression, but I have learned to manage that and find joy in the littlest thing I can.....my dog's face in the morning, a bird song, a nice sunset, and I have learned to let these things sustain me enough to keep going.

Any way I can help, I am here for you. And so are others here on this forum. that is why we are here.
You are welcome here, and you are not alone.
 

Marvis

Distinguished member
Joined
Jan 28, 2017
Messages
148
Reason
DX FIBRO
Diagnosis
05/2016
Country
CA
State
Ontario
Hi Kaila,
I’m so sorry you’re going through this struggle at such a young age.

I’m writing from the perspective of a 52 year old who’s had Fibro for 30ish years.

We all go through various stages in how we deal with our illnesses. You’ve been hit hard and fast earlier than most, at an age when you’re most ambitious and full of dreams for the future. It’s the absolute hardest time to be sick.

it sounds like you’ve been fighting your illnesses with everything you have, trying the medications, the diets, the exercises, the recommended, the not-recommended. There’s a point in this journey where you realize that medical doctors don’t have the answers and so you try to find them yourself. It’s exhausting on top of a disease that causes exhaustion.

One thing I didn’t see in your post (and that’s not a criticism, it’s another stage you haven’t been ready for yet), is acceptance. You have several chronic, frustrating illnesses that doctors and scientists haven’t figured out yet. They can identify it. They’re (mostly) starting to take it seriously. But they haven’t found really good, effective treatments that will solve the problem.

You can live a good, fulfilling life within illness, but it is going to look different than what you thought it would and it will look different than the societal norm of ‘success’.

Take a break from battling and let yourself really get to know your body. Learn about the concept of pacing. Pacing is a critical concept in chronic illness. It’s about defining your energy envelope and living within that allowance. You may be exercising too much for your body’s needs. You may be overdoing the diets and depriving your body of foods you need (especially with PCOs and diabetes). Stick with the medication you’re on, eat healthy, ease up a bit on the exercise, add more rest and really listen to your body.

Relax your control a little and see what your body needs. Myself as an example (and remember I’m old lol and have been sick forever): over this covid period I’ve worked at banishing guilt over my lifestyle. My husband has been working from home and he has been encouraging me to nap every day. He can see (where I have my blinders on) that I achieve more and am happier if I have that good long lie-down in the afternoon. I have couch days when I feel really unmotivated, because that’s usually my body telling me something is up - and sure enough if I force myself to do a chore or task I crash very quickly. Sometimes I have two naps if that’s what I need. I don’t go out a lot. My life is very small, cosy and quiet - covid lockdown necessitated that, but it’s become such a blessing to me that it’s a lifestyle I’ll continue when things reopen, with carefully planned activity. In exchange, I’ve been calmer and happier. I’ve managed to start a very small business that makes me happy. I’m able to be present and helpful to my kids and my husband. I feel less I’ll and more able to cope.

For you, though, it doesn’t need to be that small and quiet. Once you have a good idea of your limits, you can plan better. Can you have a farm? Maybe not a big one with lots of animals that you will be solely responsible for, but a small one with some chickens and couple of goats, probably yes. Start very small and grow slowly. Will you be able to do that and still work out? Nope. That would be your exercise. Can you have a family? Lots of people with chronic illness do, so you’ll have to look at your situation. What kind of support do you have? Is your partner going to be working at home or at an office? How will you meet your rest needs while caring for a baby? It’s not a no, but you’ll want to do more planning than the average person.

I’ve been where you are. I well recognize the panic in your letter - the whirlwind that must be in your head of ‘I’ve tried everything on the list! How do I fix this?!’ You can’t. But you can make it better. You can have love and fulfillment and beauty and a gorgeous life, you just need to do that within your body’s needs.

hugs to you.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,531
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Excellent advice from Marvis, above.

I think your best approach is to hold off on all that planning and focus now on your body and your life and find the ways that you can improve things for yourself. If you take the time to do that now, as Marvis suggests, then you can reach a point where perhaps getting the land and starting very small with your farm dream will not be overwhelming to you as it would be now.
But you cannot truly focus on your health and feeling better AND on a farm, let alone a child, at the same time. Well, you could I suppose if that were the situation you found yourself in when you developed the problems. But it would be many times harder and it is highly inadvisable to put yourself deliberately into that position.

Marvis is right...........you can have what you want. Maybe just not this year or next, and you may have to adjust what you think you need or want so that it is something you can reasonably do without bringing more health problems.

I always say you can, within reason, do anything you want to do. It might just not be now, and the goal might have to be modified a little bit or a lot. But.....I always remember: a double amputee can run a marathon. It just has to approached differently.
 

Chickie

New member
Joined
Mar 3, 2021
Messages
3
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
AK
Hi.
That totally sucks. I understand how you feel. I'm 21, and I developed fibro when I was 17. I also have PCOS, I don't have diabetes but my doctor put me on metformin in order to prevent me from developing it. I also have anxiety and depression and I struggle with eating disorders. I also live in an area where there's not much in terms of specialists except for my gynecologist so finding care can be tricky.

Currently I'm working as a certified nurse aid at a long term care facility. I'm in nursing school, too. However, I only work 3 days a week, and I take classes part time because it's all I can do. Those are my boundaries. It took a long time to figure out exactly what I could do and what my body needed. I also live on my parents farm and help them with it.
My best advice is to have a regular sleep schedule, as regular as you can get it, and magnesium supplementation. This is also going to sound crazy, but weight lifting, swimming, and hard work will do wonders. You'll have to build up to it, and you'll have to listen to your body. And some times you'll have a really off day when you'd been doing really well and it can feel like the end of the world. My job is very physical, and I also worked as a landscaper for awhile. When I was between jobs in the winter and wasn't doing much physical activity, I was sicker. Plus it was harder to do things in the spring. Get exercize.

My boyfriend and I dream of having a ranch and kids together so I can see why you're frustrated, because I feel all those same frustrations.
 

Manatee

New member
Joined
Jun 19, 2018
Messages
3
Reason
DX FIBRO
Diagnosis
02/1991
Country
Uni
State
Florida
I can only tell you what has helped my fibromyalgia and it is differently worth a try. I take curcumim 1200mg with pepper extract per day with boswellia 1000 mg per day. Drink lots of water all day and do stretches like chair yoga or walking. nothing aggressive or a long time. you just need to move enough to help your body work to remove some the inflammation that is encasing your muscles.

If you have arthritis start at 2000 mg of MSM. I currently take 4000 MG and rarely have pain from my arthritis in my hands and back unless i sit still to much. Its like fibromyalgia is encasing your muscles and arthritis is encasing your joints. Movement is hard at first because of fear of increased pain but movement is necessary for your body to work properly. like a car engine that never runs. You go to start it and it has frozen up. The supplements break up the inflammation and the water and movement help you eliminate it in your bowel movements.

Try it for two weeks and I guarantee you will notice some improvement.

I have been on this regimen for a few years now. I can garden, I am taking care of my husband who is very sick. I do have to stop and rest between tasks but I do so much more that I used too
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
676
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Try it for two weeks and I guarantee you will notice some improvement.
Ahh..... if only... 😥
(The herbs & MSM'd exacerbate my IBS, drinking pure water my pee pain & frequency so also sleep, regular walking my legs/Ache...
- But of course they are ideas that might help someone, just not me!)
 
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