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Posted 11/2/2011 1:06 PM (GMT 0)
Hello everyone, I am new here and this is my first time posting. I have come here because I am so down and I feel like I have nowhere else to turn. I feel like no one understands how I truly feel and think I am a lazy hypochondriac.

I am lucky to have a day go by where I do not have flu-like symptoms. Severe nausea, headaches, pain, fatigue, lethargy, depression plague my life. I feel like I'm trapped in this foggy prison with no relief.

It is so hard for me to work. I have a job which I genuinely enjoy but I dread going to work knowing that halfway through the day I will want to put my head on my desk and cry. I know my boss can tell I am feeling poorly but I'm scared he is going to get irritated with me and think I am just a hypochondriac looking for attention. It is very hard to work when I feel like this...almost impossible.

I was always really healthy and athletic. Last year when I was 23, I came down with an illness called HSP which required extremely high doses of steroids. I have never been the same since then. According to my Dr., the steroids set my body in "panic mode" and triggered this fibromyalgia. I honestly feel worse than I did when I was sick with HSP! I hate steroids for this and will never take prednisone again.

I am really trying to find people who understand the constant pain and misery I live in so I know I am not crazy. I also would like to know how some of you find relief and hold a steady job. Thanks!
Posted 11/2/2011 1:34 PM (GMT 0)
Dear Lag

Welcome to the forum-this is a good place where noone thinks you are a "drama queen". Have you talked to your doc about medications for fibro, or ruling out other diagnoses? Counseling too helps if you do have a chronic health condition...of course you are depressed, but you don't have to stay that way. I thinnk my first 2 years of fibro were the roughest because I did not have much support from family or doctor and could not cope with being exhausted all the time.

I am on meds, I see a counselor and I learned to pace myself.

This can be tough, but you can have quality of life if you learn coping skills.
Have to run take care and keep posting
Maggie
Posted 11/2/2011 5:21 PM (GMT 0)
Welcome to the forum...sending you gentle hugs. I'm so sorry for your pain. My heart always goes out to the young people.

Is HSP a form of vasculitis? I understand steroids too... hate prednisone. Besides fibro have an autoimmune disease so I have experianced the horrors of steroids.

Living with chronic pain is an adjustment, especially if you have been an active person in the past. We slowly learn and accept that there are going to be things we can no longer do. Grieving is part of a process that we all go through...we are mourning the loss of good health. In time, you will find activities that you enjoy that don't put as much stress on your body. With fibro it is important to be active but you need to pace yourself. I am a walker and it does help with stress.

We need to do what we can do to help ourselves feel better. Finding ways to distract the pain is essential. I live a pretty active life in spite of my illnesses, it can be done...believing is always the first step.

Heat always makes me feel better and I do deep breathing and meditation to help relieve stress...it does help.

If you are having trouble with depression, please talk to your doc to see what alternatives there are...many have found help with counseling.

I'm wishing you the best...keep posting, we do care!!!

Hugs, Robin :-)
Posted 11/2/2011 6:13 PM (GMT 0)
Hi, Lag. I'm new here, too, and I'm right where you are, though I'm about 10 years older than you. I'm in a bit of a flare right now but I'm fighting the fatigue more than the pain at the moment (Cymbalta has taken the edge off the pain but I have zero energy.) I've been out of work for two days, plus I took last Wednesday off just to try to sleep. I get sporadic sleep at night, between not being able to fall asleep and waking up every hour or two for no good reason.

I have sick time, fortunately, and my boss seems fairly understanding, but my DH chides me and says taking all this time off is bad for my career. We work together in the same location and he has an incredibly strong work ethic (not that I don't). He'll work through colds and the flu and kidney stones (especially while he was working from home at his last job) and rarely takes vacation time. Me? I can't bear to sit at my desk feeling exhausted like I do so I WILL call in when I need to take a day. But if I tell him I'm not going in, I get big sighs in return and usually lectured at about how this isn't such a good idea, how bad it looks, etc. I can't sleep a lot on the weekends because that's when everyone's home and it's the only time I can get any kind of housework done. Monday comes around and the whole cycle starts over again. *sigh*

I can't help but think folks look at me like I'm just lazy. I don't *look* sick. Nothing's swollen, bandaged, or on crutches. And it's frustrating when just trying to detangle my hair wears me out in the morning. Add to that the sadness I feel that THIS is the way I'm going to feel, off and on, for the rest of my life?! Fantastic. I'm trying to keep a positive outlook, but sometimes it's hard.

*gentle hugs* We all know where you're coming from. You've got friends here who understand.

...Mel
Posted 11/2/2011 8:14 PM (GMT 0)
Hi, Lag, and welcome!  Your story is very familiar to me.  I was put on a Prednisone dose pack and the day I took the last pill was the day I was hit with fibro.  I was just watching TV and the pain started in my feet and worked it's way up my body...on both sides.  I thought I had rheumatoid arthritis but it was fibro.  That was over two decades ago.

 

Life can be a challenge but you will discover what works for you to CONTROL the pain.  I'm not pain-free but am in control of the pain.  Once you do that, you will do far better.  I have had a full and enjoyable life in spite of this illness and you can too.

 

I used to use ibuprofen with food but that caused an ulcer so now I take a very small dose of Vicodin (to take the edge off the pain), extra strength Tylenol, malic acid/magnesium supplements and vitamin D3 supplements to help with the pain and fatigue.  I also do gentle stretching exercises (they are done sitting down so you could manage these at work), daily gentle exercise (I walk or swim), gentle massages, and I pace myself when doing things.  All of this help me to have a quality of life.

 

Be sure to check out Fibro 101...the second thread on the forum.  There are links to good information about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  There are links to the gentle stretching exercises and also to the vitamins and supplement that I mentioned above.  The links will explain how these work in the body.

 

Fibro fog?  Fun, huh?  The very best thing is to have a sense of humor about the fog and know you definitely are not alone.  When I first start with fibro fog I thought I was coming down with Alzheimer's!  It was frightening.  But now I know what it is and I just laugh at the dumb things I do.  I'm not stupid...I have an illness that causes the cognitive memory problems.  Here is a fun link.  You will see yourself there and have some laughs, too.

 

http://webspace.webring.com/people/fc/cfsdays/follies.htm

Try to keep a positive outlook on life  This has helped me soooo much.  I look at the blessings in my life and not the negative things.  The blessings far outweigh the negatives.  There is a wonderful article on Fibro 101 about having a positive attitude that you just might enjoy.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

 

Posted 11/2/2011 9:18 PM (GMT 0)
Hello!! I am new to posting as well, but have read through this site occasionally for sometime.
I am 33 years old and have had it for 9 years. I went 2 years with tons of misdiagnosis and that was my hard part for depression. Constantly being told I had something and then the symptoms would worsen or add new ones and then be told you have something else instead. Then once I was diagnosed I was relieved while upset at the same time. It is one of those things you just found out you have something with no cure and you are stuck with it. You always want that diagnosis where you are told a surgery would help or something else. So for 3 years I was depressed and eventually I started to change things and take care of myself better. I am in pain all the time but most of it I deal with and go on with my life. People don't realize I am in pain or have something wrong with me cause in general I try not to let it show. I mean I am always rubbing my forearm or moving my wrist or things like that but I am not usually bedridden. I exercise about 2 hours a day, heavy cardio or weights. when I stop or take time off for it my body basically goes in shut down mode. That is when I feel very fatigued, very sore and at times have to stay in bed for a day or so. I know for some people they can barely exercise because of the pain but for me it helps dramatically. I have had or still have many symptoms that come along with this wonderful thing, like sleep issues, migraines and headaches, neck issues, IBS, depression and the list goes on.
You will be fine, but definitely speak with someone about the depression. Before you get that taken care of you can't do anything else for yourself because that will consume you.
Posted 11/2/2011 9:23 PM (GMT 0)
Oh I forgot to mention that as far as work goes for me, I lost my job when I was first going through all of this 9 years ago. I since then only worked fulltime for one more year after that at a bank which killed my right arm counting money all day. I know something most people wouldn't understand, but my forearm was on fire everyday from pain. I am fortunate enough to have a husband that is able to have me stay at home. I don't know how my condition would be if I had to work fulltime. I do have a cleaning business technically but I only clean one office one day a week, not different then all my house work that I have to do all the time with three kids, 2 dogs and 2 cats
Posted 11/3/2011 12:22 AM (GMT 0)
Welcome to HealingWell Lag & Tonya! Lag, I am sorry you're so down right now, but you've found a great place to vent, learn and grow. Many, if not all of us have been where you are, so we certainly understand. Like you, I was athletic and overall healthy before fibro. The constantly changing symptoms and pain we exp would cause anyone to be miserable, but there is good news. You can become pro-active with finding ways to live the best life that you can. Due to the symptoms associated with this Syndrome, I experienced depression, and ultimately developed anxiety and panic attacks. I am currently taking meds which helps with pain, depression, anxiety and panic. I sometimes take a muscle relaxer for restorative rest during fibro flares. I do not take pain meds because they're not effective for me.


I was self employed at the onset of fibro, but later took on a full-time job which consist of me helping others. This job has made all the difference in the world for me initially, because it provided me an opportunity to not focus on my symptoms, but oversee the care of others who could not care for themselves. I noticed on many days while at home, many symptoms would get the best of me on occasion. I push myself on occasion to work on days where I would like to stay home in bed, but, I believe that many symptoms will subside with keeping busy and helping others for me. If I start calling in for fibro symptoms, I know it will be much easier the next time, and, I will convince myself not to return at all, so I fight through it. Oh, and I have informed my workplace that I have Fibro, just in case I need to be out due to overwhelming symptoms.

Are you taking anything to help assist with Depression symptoms, or any other symptoms???

Have faith that it will get better with time. Meanwhile, guard yourself with knowledge. HealingWell is a big positive part of my knowledge, and taking a leap out on faith.
Posted 11/3/2011 4:10 PM (GMT 0)
Thank you all for welcoming me with open arms!! I appreciate the advice and encouragement immensely. Today has been a tough day...the pain is getting the better of me but I am trying to stay strong!

I am on an anxiety medication to help with the depression but here is the catch, my husband and I are wanting to get pregnant and remaining on the medication could cause birth defects. My doctor is slowly weening me off of the medication but it is very difficult and the withdrawals are not helping with the situation! Needless to say my husband is a saint for putting up with my crankiness!

I am very blessed to have a wonderful supportive husband who tries to be as understanding as possible and help me to feel better.

I am so glad there are other's out there like me who understand what I am going through...y'all give me hope :)
Posted 11/3/2011 5:49 PM (GMT 0)
Hello Lag,

Let me add my welcomo to this great forum. Like everyone here, I understand your frustration. It's not fair! But, there it is anyway. You are so young...I like your depiction of fibro as "a foggy prison with no relief." My husband tries, but he really can't relate. The man is 58 and scarcely knows what pain & fatigue are!!

Sherrine, I'm sorry you had to switch from ibuprofen to Vicodin - I know you didn't want to. The idea of being on narcotics isn't a pleasant one. I take Tramadol but definitely wish I didn't have to.

Debbie
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