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11/10/2010 06:27 AM

My 1st day looking for a Fibro/Lupus support group

Shelly46013
Shelly46013  
Posts: 11
Member

I'm feeling a bit overwhelmed as I have been diagnosed with Fibromyalgia but as I've been adding up all my symptoms including a great deal of hair loss starting a few months ago and in the process of being tested for Lupus. Although I'm very sad that this is most likely my outcome it is a big relief to know why my life has unfolded with all the medical problems I've had. Miscarriages, headaches, fatigue, unexplained rashes, chronic pain (even my head feels too heavy for my neck)!

Anyway I am in desperate need of support. I feel that everyone around me thinks I'm a hypochondriac and it makes me sometimes feel like I'm just plain psychotic and insane. No one can possibly understand unless they live it themselves.

For the longest time I've been asking my doctor to keep upping the dose of my prozac because it's just not helping me but come to find out... I'm probably not even really depressed at all... it's just the fatigue and the pain the worry and stress making me feel symptoms of depression!

It's such a sad thing to say that I don't want to be in the world anymore because I'm so miserable but it's just how I feel but I know my son (who has autism) is counting on me! I'm single and trying to take care of my own home I bought 12 years ago and everything is falling apart and I can't seem to find much help these days. I mean who wants a broken down 45 yr old woman with a child that is overly dependent on her that can't even stand long enough to do the dishes and make dinner? Life really sucks and I'm hoping some of you here have some ideas or words of inspiration... and yes... I do know I'm blessed and I do have God but sometimes I don't feel worthy of his grace.

Anyone else feel this way too? Sideways

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11/10/2010 06:46 AM
blassiter
 
Posts: 58
Member

shelly, shelly, Wait We all get down and want to give up, but this is normal, I am 64 yrs old I have to work I have a grandson I can't play with anymore since I hurt too bad and can't run and take him places anymore, I can't make love to my husband (not yet ) I can't dance and play golf like I use to, but I still have to work, and I have to wear oxygen, yes I want to give up too sometimes, but with God All things are possible, , don't be afraid, God gives you the spirit of love and strength, use it, even if it is just using your mind, even though th ebody does not go with the mind right now, the power of prayer is wonderful, that is what had gotten me through and taking me through this, along with friends, family, don't be afraid to ask for help and support, you have come to the right place. Gentle hugs and blessings from me- Bonnie

11/10/2010 07:04 AM
mar1976
mar1976  
Posts: 98
Member

Shelly,

Oh my you poor woman! I have known quite a few people who have been misdiagnosed with fibro when they really had lupus. You do not get rashes, fevers, or swelling with fibro. Make sure your doctor hopefully a rheumy does all of the autoimmune blood tests that have similar symptoms of lupus. There are many autoimmune diseases other than lupus that cause rashes and joint pain, etc. I understand that you feel defeated and deflated but you are not alone and of course you are not a hypochondraic. No one wants to be ill we just are. Usually once you get on the proper medication you will feel a bit better. I had no good days before the plaquenil and steroids. A great way to tell if it is autoimmune of fibro is to go on a taper pack of steroids. If it is autoimmune it will help almost instantly if it is fibro your symptoms will stay the same or get worse. A taper pack of steroids because they are short term and not high dose do not carry the same awful side effects of long term or high dose use. The prozac may just not be working for you, you may need to switch depression meds and be careful if you start other meds that they work well together. If you are feeling so sad that you want to die then you probably are depressed, lupus can also cause depression along with many other neuro symptoms. I hope you feel better soon. Best wishes and gentle hugs.


11/10/2010 07:06 AM
mar1976
mar1976  
Posts: 98
Member

One more thing, have you been tested for lymes disease? Lymes can mimic lupus to a T and can actually cause autoimmune disease.

11/10/2010 07:30 AM
redhairali
redhairali  
Posts: 3746
Group Leader

Hi Shelly and welcome to the group. AI diseases can be a pain to figure out. They tend to overlap and often we have more then just one. One common that we all seem to have is that stress can be very hard on us. And it sounds like you have a lot. Just remember you are not alone and visit here anytime.

Alison

Post edited by: redhairali, at: 11/10/2010 01:29 PM


11/10/2010 10:23 AM
mumeva
mumeva  
Posts: 6155
Group Leader
I'm an Advocate

Hi Shelly.....welcome to this fantastic support site. This must be very overwhelming for you....anxiety and depression can be part of this illness. The people here truly understanding and offer great support. You will be very happy you joined this site.....I know I have been. I hope that we see you often here. I wish you well.

Eva


11/11/2010 11:08 AM
Bunnyhugger75
Bunnyhugger75  
Posts: 2019
Senior Member

Hello Shelly and welcome to our lovely group! My heart goes out to you. You sound completely overwhelmed and alone! Many of us go through the same exact things, that nobody can understand without Lupus. Please lean on us anytime you need to. Check out the Lupus Foundation of America's website. Read "The spoon theory" . These will be full of resources for you. I hope that you are feeling better soon.

Take Care,

Amy


11/11/2010 11:35 AM
SammieGirl
SammieGirl  
Posts: 113
Member

Shelly – you came to the perfect place! The single parent gig is hard (I have been divorced for 8 years but I live with my sister who helps out a lot), throw in an autistic kid (my older son has Asperger's [my younger son is bipolar]) you now have it ten times harder and THEN throw in an autoimmune disorder and you are just about ready to throw in the towel! I have only been a part of the group for a little while and I have found some much support here it save my sanity some times. I tell my sister on a regular basis that I feel like a damn hypochondriac and she tells me time and time again she knows I am not, but it feels that way. This hurts and that hurts and this is going on and that is going on. Really?

As far as the “I mean who wants a broken down 45 yr old woman with a child that is overly dependent on her that can't even stand long enough to do the dishes and make dinner?” your kiddo sure does! I get that way too (more often that I would like to admit).

Like I said, you have come to the right place! Everyone here has been so kind to me and it does make a world of difference. Even when you have people near you who support you, they do not understand what it feels like to deal with this.

{{{gentle hugs}}}

Sammie


11/11/2010 12:58 PM
zizzcat
 
Posts: 515
Member

Sad Hi Shelly: I'm sorry that things are so difficult right now. I know that I have deppression and one of the aspects of deppression is that when I am down, it seems like it's going to last forever. It seems that way, but somehow we get through it.

This support group is really great!

It sounds like you are doing everything you can.

Hugs

HopeSilly


11/11/2010 08:37 PM
Shelly46013
Shelly46013  
Posts: 11
Member

I really don't want to die, I just want my life back and to be taken seriously. I get pain blocks in my back because my discs are gone L4 L5 L6 and my neck C3 and C4 and to top it all off I have fragments of discs compressing up against my spinal cord. So due to this, I've had to take steroids and plus what comes in the pain blocks and it works for a short while and poof, here comes the misery once again! I guess I should reword what I said to I just don't wanna live like this anymore.... It's good to know I'm going to have such good friends while I'm facing such bad news THANKS and (((hugs)))
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