For those who haven't read my posts, I'm 27 (about to be 28 on 4/30) and (to make it short) have pain (intense burning sensations with a mixture of deep dull aching and sharp stabbing) in my upper / middle / lower back, hips, deep dull aching in both legs and arms, anxiety, very mild depression, migraines, severe fatigue, cyclical pain levels and muscle stiffness each day, forgetfulness, numbness / tingling in my left arm and left calf / foot, uncontrollable twitches, horrible nasal allergies, and dry eyes. I'm on 20 mg Opana ER (1 am, 1 pm); 10 mg Opana IR (1 every 6 hours); 10 mg Baclofen (1-2 every 4 hours); 60 mg Cymbalta; 300 mg Lyrica; & 250 Nuvigil
Now, time to VENT .. First, I am not going to say that I'm depressed, but I think I am more frustrated than anything. I am frustrated that I am not able to do what I want to do, when I want to do it, how I want to do it, and finally without asking for other's help! I just want to be a normal 27 year old guy that can do things a healthy guy can do. Before all of THIS happened I could spend countless hours woodworking, to relieve stress, but now I rely on my Xbox.
I think the things that I am stressing most out about is that I have not been able to get a diagnosis (read a few of my posts for full list of symptoms, tests, and results), so I worry of what could be and what will become. I worry about my wife and my's financial well-being and will my short-term disability, mortgage & vehicular disability will be approved for another month? Will I be able to ever do all or a portion of the things that I once was capable of doing? Will I have to be dependent on medication for the rest of my life to just be "comfortable"?
In the title I put Alone, but I don't know if that describes my situation. I am married to the best wife for 7 years (this September). She understands that I am in pain, but I do not think she realizes to what extent. I feel that I can't / don't want to express EXACTLY what I'm going through primarily because I don't want her to worry about me. Her job creates a lot of stress sometimes and periodically requires travel. I don't want to add more stress on her and while she is away. I know that if I told her the toll whatever THIS is has taken on me then I'm afraid how she'd react and how she'd treat me, because I do not want to be pampered, I want understanding. I want to be understood that IF I don't want to go out to an amusement park that it is not that I don't want to spend time with her or our friends it is that MAYBE walking for so long causes my muscles to ache and my back pain to sky rocket and I know that exherting so much energy / effort will cause me to be in extra pain for a few days. As of right now she is pretty understanding and I have not had to express all I have / am going through. So until that time comes I do the things we all do and put on a happy face and grit our teeth and do what needs to be done.
Does anyone have any advice / feel like their in the same boat?
"If you have ignorance about something seek knowledge, because ignorance breeds hate and hate breeds destruction."
your beautiful wife will never be able to understand. compassion? yes. understand? no. you have to be us to get that and we don't want that.
i am an advocate for honesty. there is much peace in truth. keeping up a pretence is thoughtful of you, but it also brings on more stress to keep up the act. your compassion for her is admirable and honorable. you want to protect her. bless your sweet heart. oops i sound like a mom. yea, i am old enough to be your mom, giggle.
i think all i can offer you is this bit of advise i learned the hard way, of course! stress and worry solve nothing. all the worry in the world will not change anything. i learned to breath deeply and slowly when that emotion of frustration hits.
you mourn the loss of you and flop around trying to find the new you, understand the new you, and find a way to make it work. it is a lonely process. yet one we must go thru to find the peace with life as it is.
saying no to someone you love is hard. yet we must at times do just that. on any subject, not just health. gee, can you tell i am old, giggle.
many bits of joy on your birthing day. if you hear singing when you wake on your birthing day it is me way up in the mountains singing happy birthday to you.
Hi there. You are going through the same thing we have all been through at one time or another. It's tough, I know. I too am old enough to be your Mom. I will tell you what I would tell my own child in your situation. It is what it is and the only thing you can do right now is understand that in time it will get better. It might not seem like it now but this is not an easy thing to swallow. Like any other illness, cancer, MS, Lupus, ect...we all find a way to deal with what is given to us. It takes time, patience and understanding of self. You can and will find a way to deal. When you can't do something you would like to do find something you can. You will get the satisfaction of getting it done. I have 9 grandchildren the oldest ones were so used to me running around with them as they were growing up. I can't do that anymore. I explain to them that my body is not the same as it used to be. And I tell them why. But I can do other things with them. I find a way. It just comes to me. I cry sometimes when I feel like my body has foresaken me in ways that I just can't explain to my Husband. But he too understands and forgives and is even more helpful than he used to be. Your wife loves you. And there are so many ways that you can show her your love. I know you feel helpless and worthless now but soon you too will find your self and it will be good. You won't find it in a diagnosis or find it in the meds you take. You will find it in you. Only you can do this and you will.
We are all here for you too. That's what these boards are for. So have a Happy enjoyable Birthday. And most of all try not to worry. Worry is stress and it just makes things worse.
Like Cat said, we have all been in your shoes at one time. I am sorry you are going through this. However, you need to define this new lifestyle and find what works for you and your marriage. You need to be honest with your wife, after all you married in sickness and in health.
Here are some things that you need to work on: getting good sleep, even if it means taking an aid, find a exercise program that works for you, maybe walking with your wife, eat healthy, drink lots of water, avoid sugar, caffeine and alcohol. Try to find if some form of woodworking or whatever makes you happy, taking our minds off of this stuff for awhile helps. You are very young and have a long life ahead of you, so you need to find what works for you and make the most of it.
I have the same thing you do, Im 42 year's old.It started over night for meI had deep pain in my left hip,3 week's later I went to the doctor's.By the time I got there I had it in both hip's and leg's and part's of my body had burning spot's I remember my feet feeling like they were on fire,muscle spasm too.Ive seen every doctor,x ray's 2 mri's 13 blood test and nothing.Im so disgusted with doctor'sOne doctor think's I may have fibromyalgia but I dont have 11-14 tender spot's and Im not certain I have that.I do take trazadone to help me sleep,but that doesn't work all the time.I have a new symptom evey month.I would really like to find out what I have too.I still work,but I can sit,stand,walk anytime I want if It wernt for that I dont think I could work.I know what your going through but you have to keep the faith,and take one day at a time.
Hello & Welcome!
Like the others said, she'll never understand but being supportive is still a wonderful thing! My husband doesn't get it, but I think it's the impact on his life that makes it hard, not what I'm going though...
I'm going on 31, had problems since exactly 12 yrs ago this month... Mostly fatigue & mental fog among other things. The pains are more recent. It was wonderful to finally have a diagnosis, but because there is no cure, I became depressed about it. Doing better but still have my days.
Blue told you the same thing she told me, which really made an impact! The fact that you have to mourn the loss of you... You will never be the old you again... But you have to find the new you & manage a whole new lifestyle. Yes it is frustrating, but so true.
Stress causes sooo much pain, you have to do your best to avoid it. But hey, if someone said that to me months ago I would of laughed & said yeah right... But I'm on Cymbolta also(my hero!). I'm on a muscle relaxer for sleep which is yet my other hero (Flexiril). I've done really well managing the pain by changing how I live. I'm no longer pushing myself & stressing. Exercise is becoming one of my top priorities (My kids are #1 of course). It's hard to exercise when you are sooo exhausted & sore... Especially in a flare. But, you have to do it. Also, people like us with Fibro tend to need puzzled & games to keep our minds strong. We seem to crave it... Atleast that's my understanding. I prefer logic puzzles. But, I miss drawing & crafts that I used to live for. Hopefully one day I'll get back into it. It's hard when you lose the desire...
Anyhow, All we can do is share what we know, be supportive, & listen. It helps to be able to talk to others that really do understand how tough it is.
Oh, one more thing... As if I don't talk enough already...
What kind of Dr are you seeing? You should see a Rumetologist or Nuerologist... I prefer the first one myself... I think you know what is going on, but a diagnosis to confirm helps.
F150, I know how you feel. My husband is very supportive but can not understand...not really. At work I made the mistake of telling them when I was diagnosed with fibromyalgia. There are varying opinions, I know. One of the managers thinks I am just depressed. One of the pathologists does not think fibro is a real condition. Many days, I feel like there is no way I can make it through the work day. Sometimes I feel very very alone and alienated. This board is a lifesaver. Prayers and hugs, Diane
Hey you. Been a while..Sorry to hear you are feeling like you are. I can really offer no words of wisdom, but can certainly empathize and offer my ear to listen and a shoulder as well. I understand totally at your age the frustration you must feel, I went my whole young adult years in pain, just thinking I was inheriting the bad back genes and just had to pop some motrin and deal. I hope things work out better for you. Although I have to say it was nice having a man around here for your awesome threads but I sincerely had hoped your absence meant things were good for you. What is this medication "opana"?
I am struggling on percocets and neurontin for my fibro. I have since been fired from my job, waiting to collect and firing off as many resumes as humanely possible but there are precious few veterinary jobs and I need to be careful with big dogs. My body revolted enough with the 25 pound cats!! Sending you healing energy, good thoughts and warm, soft hugs!
peace and love my friend
(copied from another post)
Hey everyone! Sorry its been so long since my last post. I've just been really busy dealing with my STD company and getting ready to return to work. My issue with the STD company is that because of an independent doctor's exam I havent received a payment since mid-november. Luckily the insurance for my vehicle and mortgage is being paid, so living on my wife's pay check is getting us by.
The independent doctor stated that after her exam she felt that I could return to work without any restrictions causing me to have to appeal the decision so a second person could look at it. My pcp said they do not have any reason to deny me, but they often do this as a tactic just to not pay people.
With trying to return to work is a pain because I submitted all of my paperwork to return to work before it was the deadline before they "let me go." After turning in the paperwork I find out that because of that independent doctor the return to work goes through an interactive process between me, the std company, HR, Associate Relations, my Asst. Manager, and Manager. Regardless to say the company I work for does not move fast.
I finished my phyiscal therapy and sadly to say that after doing the excercises the therapist stated that my muscles did not have very much improvement if any at all. My pcp thinks it is because I get very little stage 4 sleep and deal with low testosterone. I feel a little better though. My pm doc has me on 10mg x 3 Methadone and 3 15mg of oxycodone allowed for breakthrough pain each day. My pain level is lower overall. Instead of my pain being 5-6 on average it has dropped to average 3-4, but my break-through pain can go up to 5-7. At times if feels like my break-through pain meds do nothing at all.
As far as me and my wife it has gotten better. She expressed that she knows I went through a time of being deeply depressed. This happened when I was going to a doctor who under-prescribe causing my pain to skyrocket and that I slowly sunk deeper and deeper until I changed doctors and was put back on the correct level. I feel better than I did and am doing more things around the house, but I still can't do what I once did.
Oh well ... That is my life in a nutshell for you. Hopefully I can post more often as things calm down. Wish me luck and try to stay pain free!
"If you have ignorance about something seek knowledge, because ignorance breeds hate and hate breeds destruction."
The following 2 users give hugs of support to: F150STX
catkaru (01-22-2011),tooolgrl (01-21-2011)
I had a bad experience with my short term disability company. Of course, the short term went into long term and they didn't want to pay anymore. The guy on the phone asked sarcastically, "Did you think we would pay you forever?" You have to watch them. They will take advantage of you and find every loop hole to keep from paying.
It can be so frustrating dealing with the paperwork and going through the hoops just to get what you've already paid for with your hard- earned money. And, you are doing all this while you are sick and in pain! You're right, you have to be persistent and firm with them.
The cold weather gave me an excuse not to exercise (bike riding), and I'm in more pain and stiff than ever. The last few days have been sunny (California) and I felt guilty not getting out and doing something. I think going to physical therapy kind of "makes" you move. Could the therapist be a little easier on you during your "bad" days? Do you get enough healing days in between your sessions? Or even too many?
It's great when you have a good relationship with your spouse. Wish I'd had that kind of support. It isn't easy on either side- having a chronic illness or living with someone who has a chronic illness. Remember, adversity can bring you closer.
The new life style is not easy to adapt to, especially for us older ones. You will learn what things you can manage, and what things you will have to give up. After awhile, you may even forget what normal was like, and you won't miss it as much as you thought. You go through a sort of grieving process until you get to the acceptance stage. I've found that it helps to try to concentrate on all the things you can do instead of can't.
And, remember to find time to relax your mind- stress relief, meditation, vent. We are here for you for the venting.