Have you ever been diagnosed with Chronic Fatigue or more?
Posted , 5 users are following.
I look back on my life and have, since a young child been diagnosed with bronchitus, pneumonia, excema, severe allergy to poison ivy. Then I got a severe flu-like disease at age 16. I think they called it Boston exanthus something. I got out of bed and fell to the floor. Severe pain everywhere. My mother had it at the same time and they told her she whould have arthritis the rest of her life and she did. I began to have severe allergies to everything that grows and expecially mold. Next i was diagnosed with asthma, at age 30, the Drs saying I was misdiagnosed as a child. I almost died when they did an allergy series on my back in an allergist's office. Had 2 adrenaline shots right there. Next my husband and I both got a severe form of flu that knocked us both out for 3 weeks. He eventually recovered, but, I didn't for 3 years. They diagnosed Candidiasis, Chronic Fatigue and through all this I had arthritis, which I ignored for years. My husband ended up with Parkinson's and Dementia and I nursed him through all 10 years. My back had been bothering me for years and the Drs said arthritis...nothing new there. Then my kidneys fail for no apparent reason other than I'd been taken Advil for too long. The back pain was so bad, but, I couldn't take the time for myself. By the time I got to the surgeon I had no disc left at all..L6 or 7. I recover from surgery then my husband dies. Then I go back east to visit family in Connecticut and start sleeping and sleeping and having no energy, no appetite. Lose a quick 10 lbs in a month. Get home and get this awful shoulder pain.
They start looking at Lyme (Connectcut in the woods for a month in a camper), Lupus (which would have shown up long before now), RA (no RA factor in blood tests, but, still not ruled out) and finally since inflammatory markers so high, PMR. Wow! Does anyone see a pattern here? Seems like auto-immune problems all through. I'm beginning to think the virus theory behind PMR, and other diseases, plus genetic predisposition are a cluea. I have 2 grandchildren from the same family with Type 1 diabetes (auto-immune) with absolutely no type 1 diabetes in any of the family, although they say it is genetic. Anyone had similar diagnoses or mis-diagnoses previous to PMR?
0 likes, 9 replies
audrey80537 bonnielee
Posted
After reading about your life of continuous pain and discomfort - comparatively speaking I feel I have little to complaiin about concerning medical problems before PMR. However, I did have strange and annoying small medical problems that popped up from time to time but everyone including myself attributed them to me being a hypochondriac.
I was unlike everyone else in my family. My mother lived to 100 and her mother to 108 however my mom complained of pain somewhere or another her entire life. Even though she was pretty spunky. The family doctor diagnosed her as having mild depression. Her sister who lived to 103 same thing suffering with asthma and allergies her entire life.
Autoimmune diseases are strange and difficult to diagnose
Besides myself my two sons were diagnosed with serious autoimmune diseases one losing his hearing for 4 years until recently when it returned 100% in one ear and the other with sarcadosis which has attacked his lungs but he is improving. We were all diagnosed within a two year period
Would be wonderful if more research could be done to find a way to end the cycle .
Was wondering if you have children and if so what is the quality of their health?
bonnielee audrey80537
Posted
I'm pretty spunky, too! It's what gets me through it all with a sense of humor, even!
My oldest son, 49, has had Lyme disease, twice. He lives in Connecticut and spends a lot of time on Cape Cod. Ticks are everywhere there. Lyme, Connecticut , for those of you not in the USA is where Lyme disease was discovered in the 1960s. It's a way of life there. He seems pretty healthy, but, is a carpenter and keeps in shape. My other son is 47 and he has all kinds of problems, starting with ADHD, overweight, asthma and allergies. He has an office job where he is on the computer all day, so has back pains and carpel tunnel. He doesn't tell me much more.
amkoffee bonnielee
Posted
Well much like you I started out in this world pretty sick. I kept getting pneumonia. I was in and out of the hospital many times and at the age of 4 nearly died from it. As I Grew Older I would get pneumonia at least once a year. Then at the age of 16 I had my tonsils out. Oddly enough that's when the pneumonia stopped. Although my pulmonologist said that's probably because they stop doing x-rays about that time and just called it bronchitis instead of pneumonia. In any event things stayed pretty steady until adulthood. Then I started getting one autoimmune disorder after another. First it was alopecia areata then it was my thyroid and then asthma then arthritis in one of my knees then it was PMR and now that I've had PMR I've started getting arthritis in several of my joints. I've also been diagnosed with prediabetes. I think that pretty much wraps it up. As for family my family tree is full of autoimmune disorders. So I won't even go through the list of them. My kids don't have anything as yet. They are all young adults at this point so we'll see what happens as they get older.
bonnielee amkoffee
Posted
I had my tonsils out when 12 and I was better throughout my teens and 20s, except for that wicked flu when I was 16. They took out adnoids, too. Only on a forum like this will we ever be able to figure out what we all have in common. Who knows, maybe someone will look at these posts some day and put something together for a new research project
EileenH bonnielee
Posted
I might dispute your comment "Lupus (which would have shown up long before now)" - because maybe it has but you are seronegative.
There is a superb forum on HealthUnlocked from LupusUK - I have a friend with a similar sort of history to you and eventually, in her 50s, the NHS in the UK realised it was lupus. There are others who describe a lifetime of illness - and were eventually put onto medication for autoimmune disorders and we better. I won't say cured, there is no cure for most autoimmune disease, but better and able to manage the symptoms.
bonnielee EileenH
Posted
Oh geesh, Eileen! Are you trying to boost my morale?
Just joking. I have never had the usual symptoms, butterfly rash, fevers and such. My adoptive mom had it and her daughter. She lived to be 87, but her daughter died in her 40s. She once said she thought I might have Lupus. She suffered through the time when Drs didn't understand Lupus and thought she was a hypochondriac, not unlike Fibromyalgia a few years back, now PMR. My sister used to say "call the pool guy! Our gene pool is polluted!". I will be long gone before the researchers will find out why our bodies are turning against themselves, but, I'm sure it has to do with our food, water and air and who knows what else.
Thanks Eileen for sharing all your wonderful knowledge. I always look forward to your posts.
EileenH bonnielee
Posted
Some of my lovely friends have never had the malar rash either.
It is just the need to think sideways - so many of the autoimmune disorders don't fit in the boxes the doctors have created to make a diagnosis. So the patient is dismissed.
I'm sure you must have seen me talking about my theory that ALL autoimmune disorders are interlinked - you turn up at the illness shop and they hand you a selection of signs and symptoms from the shelves behind the counter. The label you get depends where you fit in to the descriptions of diseases and labels given to them.
But autoimmune disease is increasing - and changing. Don't know why - the filth with which we have poluted our nest perhaps? But it complicates everything.
bonnielee EileenH
Posted
I couldn't have put it better. The illness shop. Will remember that.
amkoffee bonnielee
Posted