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04/07/2012 08:04 PM

Glad to be back.....

musicspeaks
musicspeaks  
Posts: 7
Member

Hello everyone,

It has been quite a long time since I've been here & I can't tell you why I've stayed away so long because in just reading everyone's posts I am remembering what brought me here in the first place.

I am in desperate need of support right now and I couldn't think of a better place to get it. Quick background - diagnosed with Fibro 15 years ago & questionable Lupus for about 6 years (no supporting blood work)Herniated disc (L4/5), the other diagnosis I'll list on my profile, just wanted to give a quick reference of where I am coming from.

I've been having the worst time lately (last 6 months or so) which have made my past flares seems like a cake walk. I've been under tremendous stress both in & out of work; which we all know what stress does to us. Unfortunately for me, no one in my life gets it.

Lately I've been almost screaming out for someone to hear me, but when I vent to certain people in my life all I hear is *chirp chirp* SILENCE and then, subject change. It hurts incredibly to feel so isolated & dismissed. I am there for EVERYONE, I feel after a stressful day of trying to keep it together & push through extreme fatigue & pain at work, I come home & then I'm the sounding board for so many in my personal life. Usually by 10pm or so I can just sit and lose myself in a little reality TV, but by the time I start to feel tired & like some of the day's stress is subsiding it's really late so I see 12a easily every night before climbing into bed. My night then consists of tossing & turning all night because I can't get comfortable & have to switch sides because it hurts too much to sleep on one side for too long and then there is the bathroom breaks. I can almost swear to waking up every one to two hours.

In the last 6 months I have been treated for costochondritis twice, my back has gone out 3x's (herniated disc L4/5), have had all over (flu like) body aches & pains, migraines/headaches at least 3-4days a week and feel like someone is sitting on my chest. I was told I have a pinched ulnar nerve (left elbow), carpal tunnel in both wrists, and tendonitis in my shoulder and knee (both right side). My hips & knees kill me never mind the pain in my hands, fingers, feet, neck & shoulders. I have fallen into a severe depression which is riddled in anger because of feeling like I worry about the stress and pressure at work (my bosses reaction to me after my last back episode was "what's wrong with you now?" hit me so deep in my gut I just sobbed for hours).

I try to keep up at work (keep up with the pressure, not take my pain & fatigue out on everyone), can't bail on family & social engagements because I'm met w/ the same attitude I get from my boss. I live alone so to get shopping, cleaning, laundry etc done can be very daunting; I've gained a lot of weight because of the limitations I have to shop, cook & eat healthy. I spend my life worrying about everyone & finally thought, well.... who's worrying about me? I want to let my doc pull me from work (she suggested pulling me so I can concentrate on finding meds & docs that can help me and getting some rest), but I got upset (crying) & said no because I fear I will lose my job & the other people I work with won't understand and resent me because now my stress just got dumped on to their stress. I am the one that everyone calls to vent to & yes, I do enjoy being the person everyone comes to, BUT, I wish someone would ask how I am and REALLY want to hear it & offer some support. Everyone says, "Just ask for help", but that is the most difficult thing for me to do and anyone who knows me, knows that. And, I'm not sure anyone realizes it or not but everyone is so busy lately that it truly seems like an inconvenience for me to ask someone to help me to do anything & then I feel guilty about it. I'm so tired of feeling guilty all the time.

As I said earlier, I am going to MRI #2 tomorrow so I declined an invitation to Easter dinner with some of my family members & it was met with frustration & silence. Like I said, I hear a lot of *chirp chirp* It's very frustrating and depressing. I have had several docs say "sounds like it could be lupus, but let's run some tests". We all know those are famous last words. Tests come back "normal" and it's dropped, um, hello, my pain didn't go away! My friend's boss also has suffered with lupus for many years and told me about 5 years ago she was convinced that's what was happening to me & told me to be prepared for a lot of tests that showed nothing & docs who would make me feel like a hypochondriac, boy was she right!!

My newest doc seems to be thorough so she is sending me to UMASS Rheumatology, to a physiatrist, and to a neurosurgeon to see if they could all come up with answers. I am currently feeling very uncomfortable and knowing I am a twitch away from my back going out again. I have made both my GP & counselor worry in my words of just wanting to give up. I don't feel like a danger, but I can say I don't know how much longer I can live this way. I am only in my early 40's and wonder how on earth I am supposed to date & build a life when I feel I have nothing to offer. My last attempt at a relationship was hard because he didn't understand or know me well enough to know why I bailed so much & grew impatient with me not feeling well all the time. I pray for a solid diagnosis & direction because I have lived this way for 15 years and the progression has gotten worse, but the support & care has worsened as well. I have to tell my boss I need a 1/2 day to go to the specialists at UMASS because it will take me a long time to get there (I would prefer the day off because the stress of trying to rush to get there will make it all worse) I know she is going to give me a hard time and I am struggling with how to deal with all of this.

I'm sorry this is so very long, but I've been holding all of that in for some time. Thank you in advance for listening, understanding & giving me a guilt free place to find support. I hope I am able to return the favor when needed. Sweet dreams to all heading off to sleep. Wishing you all a blessed Easter/Passover.

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04/08/2012 06:09 PM
Pandora74
Pandora74  
Posts: 1985
Senior Member
I'm an Advocate

Welcome back. I hope you never worry about what takes you away or what brings you back. All that matters is getting the support you so desperately need right now. I came here 2 years ago and I have never left. There are things that nobody else can understand except those of us who are going through it. I went through hell about one year ago. I was in constant pain, GI problems, migraines, insomnia. Life sucked and I have a great husband and I just wanted to give up. I can't even tell you how close I came. I was tired of waking up feeling like hell. I then decided one by one to fire all my doctors. It took a whole year and I ended up going to the Cleveland Clinic for both a rheumatology and neurology consult. I brought back the orders they wanted and my new doctors were all very supportive. You need to take this time for you and get the doctors who really care how you feel. I learned about a new therapy called Low Dose Naltrexone and I started it two months ago and it has completely changed my treatment. I wake up with almost no pain and I feel pretty great most days. I can give you information on this therapy. Its pretty new but its having great success rates. Don't get me wrong it isn't magic I still have days where I feel a little crappy but nothing like before. I have started going to the gym again and I haven't been able to do that for years. I also have degenerative joint disease in my lumbar and thoracic spine. They told me that LDN probably wouldn't get rid of that pain but it actually has for the most part. PM me if you want to talk privately. I want you to feel supported and some things we just don't feel comfortable saying it on the forum. You came back to us for a reason and I am glad you did. Hugs.

04/08/2012 06:15 PM
jeffinerd
jeffinerd  
Posts: 69
Member

Hi! I read everything youj wrote and feel your frustration. The thing you said that stood out the most to me was..."welll....who's worrying about me?" That was the point I think we all come to. You are right. YOU have to worry about yourself. If that means leaving work, then DO IT!! I know you are worried about adding to others stress, but really....you need to take care care of you. Love yourself. It will pay off. You just need some time. You will have your "up" times which will be the pay off for taking care of yourself when you NEED it. Take care of yourself my friend and know you are not alone and you are ok.

04/09/2012 07:12 PM
musicspeaks
musicspeaks  
Posts: 7
Member

Thank you so much for the replies & the support; it means so much. I'm really not in a good place right now. So I stayed home today because I just couldn't get out of bed; I ended up sleeping until 1030a & then wanted to nap by 230p! I called my doc for my test results & to get a note for being home. Blood work came back & of course, all looks good. My ANA levels were elevated, but not enough for "diagnostics". I never in my LIFE thought I would be so desperate for blood work to NOT be "normal". It's an awful feeling to wonder if this all really isn't in my head. Now I have to cancel my appointment with the Rheumy in MA if they can't squeeze me in on my day off because I can't keep putting my job at risk for them to tell me there's nothing wrong with me. The MRI shows another herniated disc so they are sending it to a neurosurgeon & will call me tomorrow to tell me if they think I need to be seen or if they just want me to see the Physiologist.

I can't stop crying; I can't take all the pressure & feeling like I'm such a hypochondriac. I just want to climb in bed and never come out. I know my back is going to go out again, I can feel it, I just pray it holds out at least until Friday, not how I want to spend my day off, but I am used to it. It's hard enough dealing with all of the fibro pain, but add all of this new stuff on top. *sigh* I used to feel like I was a strong person, but I don't feel so strong anymore. Even I'm starting to think “what now”.


04/12/2012 03:19 PM
Pandora74
Pandora74  
Posts: 1985
Senior Member
I'm an Advocate

First of all try not to even consider that you are a hypochondriac. We all thought that at one point and this isn't in your head. I am an RN and I never realized how complicated the immune system is and how difficult it is for these diseases to be diagnosed. I think doctors are sometimes scared to make the diagnosis so they keep us in limbo until something goes really wrong and they know for a fact. I would take care of your emotional well being and if you aren't already taking an anti-depressant I would get one. This is a tough journey and you have to stay strong. That is why its so important to participate in group. We understand and we know exactly what you are going through. Hugs and prayers.

April


04/13/2012 10:38 PM
musicspeaks
musicspeaks  
Posts: 7
Member

Ended up staying home all week; slept a lot; cried a lot, but am feeling a little stronger today. I visited a friend yesterday & ran some errands today to not only get me out of the house, but also because I'll be back to work full-time come Monday so I need to get my energy back or at least try to. I also had groceries delivered today so I can try to concentrate on healthier eating. I do have meds for the depression, but I'll talk to that doc about maybe an adjustment to get me through. Thanks again for the support; I'll keep you posted after my Rheumy appointment Wed. Hugs & appreciation!

04/18/2012 04:16 AM
Pandora74
Pandora74  
Posts: 1985
Senior Member
I'm an Advocate

Good luck at work and keep us posted. Hugs.
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