HAD ENOUGH!

[jeff61]

diag 15yrs ago ,wake up in pain go to bed in pain,heart attack,minor stroke,LSE,broken back ,blind in one eye,always tired,feeling very sorry for myself at the mo. HAD ENOUGH(maybe}!

[MaryF]

Hi, presumably with your history they have said you also have Hughes Syndrome/APS, I have both too plus four other things, who is managing your care? As on the Hughes Syndrome Foundation website, there is a list of recommended specialists who help greatly with Hughes Syndrome/APS and of course understand it's relationship with SLE/Lupus. hughes-syndrome.org/self-he.... Of course it is understood also that the Thyroid should be checked, plus your levels of D, B and iron. I hope you feel better soon. There is a forum on here for Hughes Syndrome, and a lot of members are on this one and that one. All the best to you. MaryF

[MaryF in reply to MaryF]

And also, please tell your GP and your friends how you are feeling you need some support to help you feel better. MaryF

[jeff61 in reply to MaryF]

Hi mary,i've been diagnosed with systemic lupus and antiphospholypid syndrome.Its just that things have been going on for so long now and i really don't feel any better than when i was first diagnosed,i have to see my specialist soon so will have a good chat with him.Thanks for caring. Jeff

[MaryF in reply to jeff61]

It is possible to feel a bit better, do stay on this forum but feel free to join HSF on this platform also. As it is tricky having both, I do understand, and we do have quite a few men on our also..... MaryF

[loppyloo61]

Hi Jeff1961, Your Post really touched my heart!! Bless you, you have more than your fair-share to deal with in life!! No wonder you are feeling so desperately low!!

I am so dreadfully sorry to hear of your hardships with your illnesses!

I am sorry I have not got any information to help you through this extremely difficult time in your life.

Other than to say I completely empathise/sympathise with your vast amounts of ailments, I have many myself!

Are you under the care of any Mental Health Team, such as a Psychologist/Psychiatrist, or any family or good friends that you can have a good chat with and express just how down & difficult you are feeling?

I am under Psychiatrist/Psychologist/CPN as I have other Rare Syndromes/Dystrophy"s plus Lupus & find talking to them helps me?!

Sending you sincere positive, healing, comforting vibes & hope you start to climb out of what sounds like severe depression, which is totally understandable & nothing to be ashamed of!!

Please keep us informed how you are feeling?

In my thoughts and prayers

Best wishes LL XX

[jeff61 in reply to loppyloo61]

Thank you for your kind comments LL,i have an appointment to see my specialist tomorrow and will have a serious chat with him. It's just been so long that i just get fed up with always feeling unwell and never seeming to catch a break.Ther's more to my story but i won't bother you with that.Lol. Thanks for caring.

[MaryF in reply to jeff61]

Make them/ask them to run a check on your Thyroid, also B12, iron and D plus a thyroid panel if any of those are out you will feel physically and mentally worse... all the best to you. MaryF

[loppyloo61 in reply to jeff61]

Hi Jeff, I completely & totally understand where you are coming from & sympathise with you utterly! I too suffer with extremely serious "Life-threatening" Syndromes other than Lupus that are so very rare. I almost lost my life to one of them in 2012, I was in Intensive Care on Life Support for a month not expected to live! But thankfully I did!

If you would like a chat with me please feel free to PM me, sometimes a problem shared is one halved? Trust me you will never bore me!! I suffer with chronic Anxiety Neurosis, Depression, OCD, due to my physical illnesses, so I know just how difficult it is for you to stay positive!!

I am pleased you have an Appointment with your Specialist tomorrow, please tell him/her exactly how you are feeling, they maybe able to help you in some way, I sincerely hope so Jeff.

I hope that you get some positive help tomorrow?

Take care

Many blessings

Lynn

Good Luck for your Appointment, I"ll be thinking of you & praying for you too.

[Hidden in reply to jeff61]

Hi Jeff. .keeping you in my prayers.nothing worse than feeling so low..I got offered a counsellor but initially refused....I'm welcoming them with open arms now,I can tell you! Getting it out ..All the frustration and never ending tests and clinics makes me feel much better...All the best x

[Lizlauren]

Jeff, I totally get it. I live in the U.S

Sle, raynauds, factor5 Leiden :about 3 dozen P.E. I situ . Thorocatomy with decortication from massive lung bleed, perineal bleed, 31 blood transfusions, CFS leak, nerve damage burning all over, extreme leg pain from vasculitis, sarcoidosis, hypothyroid, spleen, liver and H. Angioedema edema that makes me look like a monster and I'm still not done. I'm tired of living in pain and having doctors not liking me to take my pain med, which by the way are the only things keeping me from tipping over a cliff. I cry EVERY single night because of the pain I'm in. This autoimmune nightmare started 23 years ago. I don't know the exact day I became an "unperson"

It took my life away like a thief in the night and all my prayers to God and thanking him for healing me ahead of time has not brought any quality of life back at all.

In the new U.S. Of A pain meds for those very sick are their main concern for them. if they only knew.

I'm at my wits end really, I can't think of one darn thing that's good about living.

[Lizlauren in reply to Lizlauren]

May you be blessed Jeff, please know that even in my broken down heart and body I have much care, concern and love for you and all that are struggling .

My very, very best to you.

[tennissenior]

Jeff: YOU are NOT alone with all of this! We are all here and we have your back! I was diagnosed 4 years ago - at age 67. Getting older was difficult enough - getting older with SLE, the, ITP, and a load of other autoimmune disorders and aging is not easy. You can't say "I've had enough." We've all had more than our share. We all know people a lot older than we are, who are very healthy! Don't ya hate people who say "I only take one pill a day, and I'm really healty." And they have 5-10 years on me! My brother-in-law, who probably should be in a padded cell, has diabetes. Diabetes is controllable with diet and meds. They can live a long and healthy life if they are careful. We have something we can't control - no preventioon, no cure, and treatments with harsh side effects. Nothing we did in our life caused this. Mine is genetic. Some are just "cursed." Stay strong Jeff! Fight! Stay active! Keep your body moving!