I have been crying all week.
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I have SLE since 2013 or maybe earlier for the doctors were all so confused with my overlapping symptons. Rash face and body, fever, inflammation and weakness. I am 62 yrs.old and the last chronic disease I found out about with me was Lichen Planus which is also connected with the immune system degenerating. I was put on Lisinopril 2.5 mg. and took it one tome and was in ICU for 2 weeks and rehad for 7 days in Dec. 2014. I almost dies for now I have severe medicinal allegies. I am allergic to Prednilisone but I am able to take Dexamethasone. Now I have a round pie face and lots of extra pounds. I been handling this ok, just ok. But this week I can not stop crying. I look in the mirror and feel so ugly and I have always been mindful of my weight. I only take 1 1/2 mg. aday for inflammation, knots and swellings even my lips. My lymphs in my neck are outrageous. I go to a Hematologist, Kidney Specialist, Rheumatologist and Dermatologist. They say I am unique, yep, lol thats me. Oh also I have PTSD since my 40's. , social anxities and I just want to share my story and thank you all for such a kind place to share. It is lonely with Lupus and now I feel there are others who understand. Thanks.
0 likes, 9 replies
lilian05079 maylasha06851
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I have been suffering with inflammation in shoulders, upper arms, top of back, hips and buttocks..i have no swellings or redness or body rash..but I do get a rash across my cheeks and nose. I have had this for the last two months..doc sent for blood work and it came back with positive inflammation and borderline lupus meaning I have to be referred to a rheumatologist to get an absolute positive diagnosis for lupus. However, my doc says my symptoms mimic Polymyalgia Rhuematica because the pains are worse in bed and in the morning for about an hour then the pains eases off. She has hiven me prednisilone 3 x 5mg every morning. I took it yesterday morning and couldn't sleep last night was this your experience on steriods? Also my doc says to ring her friday to let her know if the pains have gone because apparently if it is Polymyalgia Rheumatica the pain will go by friday. I still have pain but it seems to have calmed down..was this your experience with steroid....i know you mentioned you were allergic to prednisolone......i would love to get your experiences with the steroids you have been prescribed.....
maylasha06851 lilian05079
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pam_87693 maylasha06851
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maylasha06851 pam_87693
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lynne69494 maylasha06851
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Waiting to see Rheumy. Seems one immune condition isnt enough to get, leads to others for many. .l know steroids arent used easily and can do well for symptoms, but known side affects are increased appetite, weight gain, round face, more active, l cant say to you your appearance doesnt matter, as l and most would be the same, it does affect us, but no one half decent would judge you on that, knowing its essential to help your symtpoms at present time. Youve gone and are going through a lot and have a right to have bad days and tears, but not a way anyone wants to be unique, but despite all youve kept your sense of humour, and l,m sure will get by the bad days, but support helps. l,m sure youve heard and read plenty about immune boosters, re food alternatives therapies. Sounds like Pam as the practical experience of Lupus and advice that could help. Typical the best team to see are private and a distance away, could you discuss that with gp or consultants, l,m sure theyre able to refer to private places, lve been to one locally a few times, through nhs, for mica bacteria, and gastritus.
Worth pushing them as much as your able, knowing its not easy when your feeling ill, maybe someone can go see docs with you for back up.
best wishesx
maylasha06851 lynne69494
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lynne69494 maylasha06851
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unique, we dont want to be, prefer normal. Take care x
maylasha06851 lynne69494
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lynne69494 maylasha06851
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