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Support groups

I have several autoimmune disorders (i.e. lupus, CREST, Sjogrens) as well as some pretty serious secondary disorders (neuropathy, heart problems) and was wondering if anyone out there has multiple autoimmune as well and if a support group would be beneficial?  I have shied away from going to support groups for various reasons but am beginning to think now maybe one would be helpful. Thoughts?

I feel like I am losing ground daily not only physically but also emotionally. I have applied for social security disability (something I said I would NEVER do) because my physician refuses to release me to go back to work. I just feel that I can no longer be the "strong" one. My rheumatologist says that I need a support system in the following catagories: family, friends and work. Well work is out now but when it comes to family and friends, I feel that I should always portray a positive, I will beat this image and not complain or be negative. Yet, some days, all I want is to crawl into bed and stay there. I don't but feel like it.
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483733 tn?1326798446
I am in the midst of being diagnosed with Lupus &/or RA and I do have fibromyalgia and have neuropathy and gastro issues.  Many of the members of my local Lupus support group have a variety of other issues like you.  It really does help to be able to talk and share.  Unfortunately when we have one auto-immune disease we are more than likely to suffer from more.  I had ulcerative colitis (cured with surgery), hypothyroidism and now the Lupus &/or RA.  
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oh yer wot did u think of e/enders live lol
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p.s remember none of us choose to be ill, so go on have a good bloody moan get out it out of your system, let them all know you need help, the happier you feel the better you feel which inturn makes your family feel better.
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I only came across this site today, i was looking for sjogens because my sister suffers from this and isn't getting any better, i also suffer with health issues but in silence, here you can have a voice in silence, it has restored my faith in human's, it saddened me to read your story and others, i do hope you get all the help you need. carol
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Avatar universal
Hi CindiAnne,

I can't believe that no-one here responded to your post. I just found this Forum today and it looks like alot of people have multiple autoimmune problems. I have Hashimoto's, Sjogrens and possibly MS and could not manage without my supportive husband and friends, both on-line and in-person.

It sounds like you spend alot of energy taking care of your loved ones' feelings and holding it together. No-one wants to be seen as a whiny defeatist, but maybe it's time to let on how hard it can be for you. Give them the opportunity to support you. It can actually strengthen your relationships to let people be there for you, like I bet you are for them.

I actually do "crawl into bed and stay there" frequently! My children are young and I rest all morning so I can be hands-on with them come 2pm and they're home wanting me.

The loss of your financial independence and career must be a terrible blow for you. If there's a support group where you live, go! The gallows humour you can share with fellow sufferers is a wonderful balm to the tired soul and battered body.

I hope you find the support, cameraderie and friendships we all need, whether healthy or sick.

Suzie

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