Life...and living it...(long post)

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Subverted
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/10/2010 8:41 AM (GMT -7)   
So... Im new here, and really just looking for advice. Not sure how people will take this but...I really dont want "sorry" and such things at this point(nothing against anyone here, I am just hearing that a lot more than I would like IRL and would like to avoid it online if at all possible). Hopefully this is in the right section, if not, mods please feel free to move this post.

My problems go back as far as I can remember, most recently though...fibro. Some of my more recent past issues started in late 2005(when I was 15), I was diagnosed with celiac disease in late 2006. The reason it took a year to be diagnosed? I have an atypical presentation where I did not lose weight and I was not malnourished, I was a 6'2" 280lb male that until the start of symptoms had worked out and hiked +10mi a week. I went on independent study my senior year and was barely able to finish highschool after being in advanced classes since elementary school. Approximately six months after my diagnosis I began to have stomach pain and cramping(not exactly what it feels like...but closest I have come to being able to explain it). After four months and three medications later my doctors and I settled on amitriptyline to help manage it after some nasty side effects from lyrica and a lack of effects from neurontin. I went from mid 2007 to December 2009 living a slightly limited(both by pain and diet) life, it wasnt great(pain wise) but I certainly wasnt complaining.

Anyway...in September 09 I met someone(who also has a chronic pain condition) and we have fallen in love with each other. Life was great, the 100mi drive that separated us didnt seem like a problem at all, my pain had decreased a bit for the first time in 2 years, I thought maybe I had finally gotten close to living a "normal" life. All of that, including meeting the girl who I am pretty sure is the one(blush), now seems like a huge cosmic practical joke life has decided to pull on me.

Starting the day after Christmas I woke up and after getting out of bed I noticed that my right hip was bothering me and that quite a few of my joints seemed stiff, definitely not something normal for an otherwise "healthy" 19 y/o. The pain rapidly increased and spread after that, by new years I was taking 2 vicodin 4x a day and the week after that my doctor refused to give me any stronger medications until I had imaging and bloodwork done. Long story short, all the bloodwork was normal(aside from elevated liver enzymes related to a bit of a fatty liver) as was the imaging. My primary care doctor had me referred to a rheumatologist and after some questions and poking and prodding of sensitive places(everywhere) he said that he suspected it as being fibro. From then till now things have not improved at all, the only course of treatment we have tried thusfar is amitriptyline that, at the higher dosage my rheumatologist prescribed, caused me to become suicidal for the first time in years... But lyrica is off the table as it caused some rather unpleasant side effects that I still have from time to time. I am sick and tired of not feeling well...ever. I am sick and tired of doctors, of getting up in the morning, of panic attacks, of levels of pain I never knew I could experience, of watching the effect it has had on me, of feeling detached, and soooo many other things...

In the past three weeks a few new things have really been causing problems... 1) I can no longer take photos, this was the one thing that I *might* have been able to make a living doing while still feeling like crap, the way I have to hold my shoulders to even hold the camera up to my face and focus causes unbearable pain(I almost dropped my camera and $600 lens the last time I tried)...I dont even want to think about how bad it would be if I tried hunching over or bending down to take a photo would hurt... 2) I am having trouble driving more than a mile or two at a time as my car, which is what kept me sane through the last set of wonderfully fun issues, has a manual transmission. When I finally work myself up to the point that I am even willing to consider making another doctor appointment I will have to have either my GF or parents drive me... 3) Right now with how sensitive I am sitting or laying down on any surface hurts to the point that my body forces all the places in contact with the chair/bed to feel numb...sometimes... My back is soo sensitive that my girlfriend cannot even give me a hug without the pain bringing tears to my eyes.

I am 19...I had to drop out of college(and had to have my doctor fight with my ins company to keep my insurance)...I have no job, no income, and the money I have is quickly evaporating. How can I ever even try to think about living a life close to normal? I cannot drive myself to work, let alone actually work... Typing this post up has taken me 4 hours already because typing makes my hands hurt soo badly(I used to do web design and write code but... I am not even up to recreational projects anymore). I have lost a lot of fine motor control because it just hurts soo much to do anything, so making things is out of the question(another thing I used to love to do that I now cant).

I just am at the end of my rope, I dont know where to turn for help or advice, my family really just doesnt understand and they cant(which I feel a bit bad about...but I guess one good thing is I now know of "spoon theory")... Sorry for the long post...but...well... anxiety attacks are good at making posts balloon out of control.

Can anyone offer me some advice? confused

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 3/10/2010 9:03 AM (GMT -7)   
I've been living with Fibro for my entire 58 years of life and all I can tell you is that you need to keep moving, grit your teeth and keep going as best you can.

You need to get some mental control over your pain and you can't do that until you get your serotonin levels back up. Serotonin in fibros is really low for some reason. We use serotonin for mood moderation, pain awareness, sleep cycles and a bunch of other things I can't remember right now. Because you have celiac's you can't eat wheat, but you should be able to do rice. Higher carb intake will raise your serotonin levels until you can get your doctor to give you a prescription for an SSRI (selective seratonin reuptake inhibitor) such as Prozac, Zoloft or other similar med.

Once your SSRI med dosage is worked out you should be able to cope with the pain much better. Also, some gentle flexibilty movements will keep your joints from seizing up. This disorder makes you want to just lay down and not move. THIS IS THE WORST THING YOU CAN DO FOR FIBRO. You have to keep moving or you will lose the ability to move. Try this simple flexibility yoga every other day for about 2 weeks. Don't overdo, just try 3 or 4 reps in the beginning of each thing and stop when you need to rest or have bad pain. Also, it helps if you take 2 aspirin before yoga to sort of "head the pain off at the pass" before it gets out of control.

Here's the easy, simple yoga site. No weird pretzel bends or strange poses. Just flexibility.

Flexibility Yoga
~ Jeannie
Moderator for Fibromyalgia and Diabetes


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/10/2010 7:10 PM (GMT -7)   
Hi, Jeannie gave you great advice. If you haven't already checked out Fibro 101 on the top
of page one, do so. There is a wealth of good info there.

Flexeril (cyclobenzaprine) a muscle relaxer helps me while I'm flaring, It really takes the
edge off the pain for me. I also take a SNRI, Savella and it helps keep the serotonin level
up, which is important for many fibromites. Heat helps, hot showers, soaking in a tub.

Like Jeannie mentioned the excercise is so important. When you are hurting it is tempting
to become a couch potato, but you will hurt all the more. Deep breathing and meditation
help me relax. Pace yourself and be careful not to overdo.

Hoping you find pain relief soon! Keep us updated, we do care!

hugs, Robin


Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/10/2010 9:56 PM (GMT -7)   
Hi Subverted and welcome to our family!

I think you fit right in with what you have described. The nice thing about this group you have joined is we are here for you but on your terms. Some folks want lots of pats and hugs and it's what they need to survive. Others need facts, information and some encouragement and you'll find that here too.

I know all of us have empathy for what you're going through even though our isn't exactly the same. But in our own way our lives too have been shaken to the ground. But, like you, instead of giving up we came here looking for and asking for help. You will get lots of ideas and opinions. Take what works for you...OK?

My suggestion would be to get a truly good and correct diagnosis. It seems to me you have more going on that just fibro but that's common with us. All of us have other 'issues' and many times depression, anxiety and emotional pain is part of it. Who wouldn't feel that way with this darn disorder.

In the Fibro 101 thread there's a link to university/teaching hospitals around the world. They all have doctors and clinics you can see for treatment. One advantage of these facilities is they are on the cutting edge of research and technology and won't pass you off when they can't figure out what's wrong.

Here's the link so you don't have to hunt for it...

en.wikipedia.org/wiki/List_of_university_hospitals

I do hope we can help with our ideas and suggestions. Keep us posted on not only your health but your life in general. We really do care!

Chutz
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Susanlynn9
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 3/11/2010 7:44 AM (GMT -7)   
I have found that, no matter how bad a flare up is or how much pain I'm in, that there are things about my life that are just precious and keep me smiling. It is important to focus on the positive aspects of your life. Take the time to really "soul search" and get to know yourself. I started this when I was on chemo for breast cancer. I felt too sick to do anything else but lie around and think. This was definitely the best thing that ever happened to me. I have become much more spiritual (not necessarily religious) and this new view helps me deal with much more adversity with little to no stress.

The more I got to know myself and worked on changing my views, the more I loved life and the less pain I felt. I am still doing this process and it helps me get through the bad days.

I also have six cats. They have helped tremendously. On very bad days, they are there to make me feel better and the positive energy that they give off really helps a lot.

I hope this helps some. No matter what, you can always come here and know that you are not alone.

I wish you all the best. :-)
Susan

Breast Cancer Survivor (2005); Bipolar Disorder; Diabetes; Migraines; Fibromyalgia; Knee and Ankle Rheumatoid Arthritis


Subverted
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/12/2010 4:32 AM (GMT -7)   
First off, thanks for the responses.

@ Jeannie - Amazingly, one of the few things I *dont* have going on is wanting to lay around. I miss doing things and, I have found, I pay dearly when I do them anyway(which really has been a big issue the past couple days as I pushed myself to a point that would have caused problems even if I was healthy to do a few things... Hopefully the dr appointment Tuesday will lead to some kind of improvement on the medication standpoint...

@ Chutz - Thank you. My doctor and I both agree there is more going on(I just really have not been mentally up to dealing with...well...dealing with things). He was quite pleased when I finally decided that I needed to get back in for an appt and called them up. As for teaching hospitals... for now... I will stick with my current doctor, I unfortunately had a bad experience with one of the university hospitals in Southern California where I am located shortly after I was diagnosed with celiac(the doctor decided, despite bloodwork, HLA testing, and an endoscopy, that I did not have it) and I am hesitant to resort to seeking care at one again, for now... But again, thank you for your care.

Susanlynn9, (un)fortunately for me, the one real positive thing in my life is my wonderful and understanding girlfriend. I really have no idea how badly I would be dealing with this without her. Most times though, it seems like there are soo many negative things going on in my life at this moment that the positive(s) are hard to focus on...do you have any suggestions on staying focused on the good in life? I realize that is a rather, erm, nebulous concept, but I figure it cant hurt to ask. :)

As an update, family drama in the gf's life ended in me driving up to her place last night and back today through all sorts of wonderful traffic, hooray for adrenalin and the person you love needing you to get you through unpleasant spots. Went from feeling better than I had in weeks this morning, well yesterday morning I guess, to the worst I have felt this week by the afternoon(surprisingly not as bad as I thought). Just what one gets for pushing it... At least it was worth it.

Post Edited (Subverted) : 3/12/2010 4:35:38 AM (GMT-7)


Susanlynn9
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 3/12/2010 6:57 AM (GMT -7)   
Every morning when I wake up, I count my blessings, starting with being alive. I then move on to each family member, each pet, and any good thing that I can think of that has happened in the near past. I see fibro, as well as the cancer and other conditions, to be a form of lesson, in that each problem that comes into my life has a lesson that can be learned from it. I believe that, through fibromyalgia, I will learn acceptance (which has always been a bitter pill for me to swallow, pun intended. :-))

My cancer taught me appreciation. Prior to that, I had pretty much taken for granted the good people and circumstances in my life. I don't take anything or anyone for granted anymore. I also make it my job to put a smile on everyone's face that I encounter. It might sound silly, but you can't make someone else smile if you aren't smiling yourself. I pay close attention to how my actions could affect others and strive to only leave positive effects behind me.

At the end of the day, I think about all of the people and circumstances of the day and feel grateful. I think about any negatives that happened that day and try to find the positive in all of them (though as time goes on with this philosophy, I find that that there are less and less negatives.) Almost every day is filled with positives.

It starts with the ability to get out of bed and go downstairs to work. Fortunately, I work at home, so I don't have to worry about getting dressed and going somewhere else every morning. That would make things considerably harder and I don't know if I could do that. My hands are the most affected by my fibro, and I have an internet sales business, so I am always grateful if I can type that day, with or without pain. Some days I simply cannot do it for more than a couple of hours.

While I understand the "spoon" story. I am not very good at portioning out my spoons, so often by 2 PM, I'm done in. This is where the acceptance lesson comes in. I need to learn that, no matter how good things feel in the morning, I need to plan each day with the same number of spoons and portion them out over the entire day. Hopefully, this lesson won't take too long since I still have a lot to learn about patience, too. :-)

Anyway, this is how I find positives in my life and can even consider fibromyalgia a positive as it will teach me lessons that I need to learn.

Hope this explanation makes sense. I just know this is what works for me. I hope it will work for you, too. :-)
Susan

Breast Cancer Survivor (2005); Bipolar Disorder; Diabetes; Migraines; Fibromyalgia; Knee and Ankle Rheumatoid Arthritis


kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 3/12/2010 10:38 PM (GMT -7)   
I have been where you are Subverted only I was married with four young children when it happened the youngest only 9 months old. I hurt everywhere and could not bear to touch myself. I eventually found a wonderful Doctor who gave me something to hold onto no matter how bad things got and yes I tried to kill myself with over doses several times. He told me to look forward to going into remission every day when I woke up. It took ten hellish yeares but do you know someting it happened. Aand it lasted for two wonderful years yes I still have pain but now I can go out for the day. We go travelling enjoying life is something I can now do. Yes remission too some may never happen.
Recently I spent anotheer few months in remission again an now take very little in the way of pain relief.
Gentle exercise is the answer like me you want to do what you used to do, but things have changed and stressing over it will only make matters worse. You have hear the term no worries, well that has to be worse thing you can do.Relax things will get better.
Now for me I understand what you have gone through with the cramping in the stomach, for me sugar is the problem yes I have IRB, but sugar sets my pain and cramping off the chart. Why sugar I have no idea I do not eat any sweets unless I feel like suffering the next day. That includes cakes etc All I can say is accept what you have enjoy the blessing's that go with it, that is a whole another post and learn your own body.That is a must simple things can cause me untold pain, but then we never know what is going to happen with this illness

Kathy from the land down under where FMS is just not talked about.

FMS, CFS,IBS, Migraine

Baclofen, Endep
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