Our Stories - Page 3
I was 13 when I was
diagnosed with having cryoglobulinemia.
My symptom at that time was breaking out in terrible hives whenever I had
contact with cold. I do not believe they knew much about this at that time.
That was 20 years ago, I am now 32 years old.
I'm 46 ,and happily married. We have 2 children, a daughter (17) and a son (21). I was diagnosed in 1995 (of course I had this way before 95) with Sjogrens and rheumatoid arthritis. I also have PBC (Biliary Cirrhosis) and FMS. There are also a few other things but I think you get the idea.
I have been
tentatively been diagnosed with Lupus
w/possible Central Nervous System involvement, as well as Fibromyalgia.
I am 100% disabled and have found my condition to be slowly deteriorating
rather than improving despite treatment.
I am a 44 y/o female living in Florida. I have Polyglandular Auto-Immune Failure. I don't know if anyone is familiar with this or not. I was diagnosed with my first auto-immune (Addison's Ds.) in 1977 and my last (MS) just three weeks ago. In between, I have been diagnosed with Hypothyroidism, Osteoporosis, Costochondritis, Gilbert's Syndrome, Mitral Valve Prolapse, and Pernicious Anemia as well as iron and folic acid anemia. I am awaiting test results now to confirm or rule-out Lupus and Sjogren's.
My name is
Jane Hutchinson. I'm very new to the group but when I can, I try to add a bit of
wit or wisdom to this craziness. I have asthma,
arthritis in my spine, IBS,
and suspect that I've also got CFS
and Sjogren's...all the
symptoms but the doc hasn't laid that on my yet. I am still working as a real
estate broker so I can't join in the chat frivolity but do enjoy trying to put
the puzzle together at the end of the day to try to figure out what has been
The autoimmune group is very valuable to me because it is a place where I can find out what is going on with others in the same situation or worse than I am. It offers the support that I have not yet gotten from all of my family.
I have had some form of autoimmune
illness for 23 yrs now. I have gotten the diagnosis of Lupus,
hepatitis. Now my ANA is neg and my liver enzymes are all good. I am
so very grateful. I am seeing a specialist in NC a Dr that specializes in CFIDS/FM
and after all this time it will be nice to see a DR that knows about this as the
ones here treat the symptoms but don't know or really want to learn.
I live in the Milwaukee
Wisconsin area. I have been married to a wonderful man for 25 yrs now. We
started going together when i was 14 and he was 18. He rescued me from all
manners of abuse at my dad and step moms. We have gone thru ups and downs in our
marriage with all my health problems. Now he is pretty well adjusted ...but i
could sure tell you all some stories, lol.
I am a happy person. I am a crisis intervention counselor. I have a medical answering service that forwards the calls to my home and I also counsel over the internet. These things (since I am not being paid) I can do as I have the health to do them. I try to make each day count for something and bless someone else in some way.
is an immune system disease where the
bodies immune system attacks the muscles of the body. The first symptoms are
rashes on the face, thickening skin on knees, elbows, cuticles, etc. ITCHING
(that is still driving me crazy) and the muscles weaken until your arms and legs
feel like wet noodles.
Treatment is with prednisone and
other immune suppressants (they only treated me with prednisone so am not very
familiar with the others) like Immunin amd others.
Everything else that is wrong with (except fibro which I already had) is due to the prednisone....osteoporosis, cataracts, high cholesterol, etc. the list is endless. In the 3 1/2 years I have had DM I have gone from not being able to get up from a chair, dress myself, turn over in bed, etc. to where I am now. I live alone, drive, use a cane, walker or wheelchair depending on the circumstance and lead a fairly normal life, or what passes for normal when you have these diseases.
Everything was fine till I actually went to have my daughter (she had to be induced) but that's another long story that I'm sure you don't want to hear about. Let's just say that I had a doctor who was still very wet behind the ears and it was rough, scary and life-threatening for both my daughter and myself.
Having the ITP under control I
figured all was well. LOL....in a perfect world perhaps :))
Warning to any guys reading this..."woman problems" are
Finally, in January (99) I went to yet another new doctor. He was 99% sure that I had endometerosis and did a Laparoscopy to fix it. Much to his surprise I did not have endometerosis but the surgery did let him know what was wrong with me and I finally got a diagnosis (after 8 years of being told it was all in my head). I have Polycystic Ovarian Syndrome..also called PCO.
The name is very misleading.
Yes, I have cysts on my ovaries but that's not the problem of the
disorder....it's a symptom. This is not a "female" problem...it is a
hormonal problem due to insulin resistance. My new doctor asked me if I
had ever been told "If you lose weight you'll be fine" I stared
at him in amazement and said that I have been told that. He told me that
that wasn't true. My weight is a symptom of PCO. It all boils down
to I'm Insulin Resistant. Basically I'm as close to having Type II Diabetes
that you can get without actually being diabetic. I have an over 40% of
I also have Hypothyroidism (I take Synthroid) and arthritis, bursitis, and tendonitis in both knees due to a stupid act on my part. Miniature Golf can be dangerous. <EG> I've had 4 knee surgeries and have been told that I need a full knee replacement. But for the last 8 years I've been told that I'm to young for it. My knees are so shot that I have a hard time walking sometimes and I can't stand up for long periods of time. I've had the steroid shots in the knee (not a fun thing!!!) but they don't really work anymore. If I feel this old at 26 what am I going to feel like at 50? That's the question I ask myself all the time. Anyway, I'm alive, I have a great family and in actuality that's all that matters.
In 1972 I
was dx'd with PseduTumor Cerbri (PTC),
by 1975 it had subsided and I thought was over for good. In 1983 it came
back with a vengeance.
In 1994 I
once again came up with the strange symptoms. This time I did some
investigation on my own, and came up with Lupus.
I went to my family
In 1998 the PTC once again began to flare. This time I became totally blind because of it. I fought very hard to return to my job (I'm an elementary teacher). This past summer I had a bilateral optic nerve fedistation which restored the vision to my right eye. But at the same time the Lupus attacked my lungs and kidneys. When I came up with pneumonia for the third time in three months, my doctor said that I could no longer work. That was November 8th.
now I'm waiting for disability to start. Things are kind of rough right
now because I'm supporting the kids on my very quickly dwindling
I was a teacher until I was unable to
keep up with the pace. I am on disability, but am trying to be active with
disability causes and am looking into going back to school on a very part time
basis to work on my master's in counseling education. I am divorced and
have a son who is 18 and graduating from high school next week.
I live in Wisconsin
in a small town called Kewaskum, it is about 30 miles north of Milwaukee. I am
from Milwaukee and moved here 20 years ago. I have a condition known as Bullous
I am not doing to
well trying to adjust to this and as everyone knows the side effects are the
Pits. Getting this under control is not going fast enough for me. I have been
reading all the letters that have come on my computer and everyone is soooo
caring and concerned. I am so Happy to have found this support group.
I'm 41, married with two grown children. We live in Oklahoma near Lake Hudson. I was a very active child, very very daring. I had many stitches and broken bones. About the eight grade I remember I suddenly woke up one morning hurting all over. Every joint and bone in my body hurt. This went on for three or four months and was gone as sudden as it came on. We didn't go to the Doctor back then like we do now, or at least my family didn't. In high school I broke my nose and have had breathing problems ever since. I spent about half of high school on crutches from bad knees. Also in high school I used to have really bad sore throats and wouldn't be able to talk for weeks at a time, of course again no doctor so no reason why.
I got married and had my first baby at age 19, after a very long labor the Doctor discovered that he was coming butt first, so I was rushed off for an emergency C-Section. I didn't have any other problems during the pregnancy, in fact I felt very good while I was pregnant. After the pregnancy I had very heavy periods with horrible cramps. During this time I got a divorce and found out I was pregnant again. I had another C-Section with my daughter just after I turned 21. With two babies I didn't have time to feel anything.
When my daughter was two or three I started having pains in my right side. My Doctor couldn't find a reason and decided to do exploratory surgery. They removed my right tube and ovary and my appendix. The Doctor told me I had numerous cysts on that ovary and that my appendix looked horrible. I got remarried at age 27 and we decided to have a baby. I had my first miscarriage and started on the road to many tests to find out why I couldn't get pregnant, and surgery for adhesions and endometrosis. I got pregnant again at age 30 and at two months I was rushed to the ER with severe pains. I had a tubal pregnancy, so surgery again. Less than two months later I was rushed back to the ER with severe pains again and back for emergency surgery to remove my remaining ovary which had twisted was the size of an orange. It ruptured on the OR table, the Doctor did a hysterctomy at that time also.
During this time I also had arthoscopic surgery on my right knee, which had "locked" up on me and I couldn't move it. The Doctor said I had torn cartlige but during surgery he discovered it was arthritis. He didn't say what kind and I never found out. I was severly depressed, sucidal, and non-funcuntioning. I started going to a therapist who actually did me more harm than good looking back. He did give me a diagnosis of Post-Traumatic Stress Syndrome over the events that had occured. The Love of my husband and family brought me back. In 1994 we had a car wreck that hurt my neck and lower back. I had a series of Epidural Steroid injections in my lower back to no relief. I had carpal tunnel surgery a few years later on my right hand, my hands and arms had been bothering me for years from heavy work I had done at a very strenous job. Then in 1998 I had gall bladder surgery. My husband changed jobs in spring 2001 and I worked to the point of exhaustion getting our house ready to sell. Everyone was worried about me, I was so tired I couldn't sleep, eat, or anything. I just sat and cried and times because I had so much to do and I felt so bad. After we got moved and all settled in, I still couldn't get over the tired feeling and I was still hurting all over, even my hair hurt. In the fall of 2001 I was diagnosed with fibromyalgia and osteoarthritis. I've tried numerous medications for the osteoarthritis, but couldn't tolerate them for one reason or another finally settling on Bextra. My doctor ordered a scope of my stomach, and ordered me to take Nexxium for my stomach problems. I started shaking and having tremors, essential tremors run in my family, and having nocturnal myclonus. Myclonus is when you have involuntary muscle jerks or tics. My Neurologist thinks my medications are allowing my body to relax enough to cause the myclonus episodes. I've had brain scans, MRI's, and other tests for the neurologic problems. My Orthapedic doctor has diagnosed me with spinal spondolosis, and I had another series of Epidural Steroid injections. This time it has helped some, my back and hip don't hurt near what they were. Now I'm getting neuropathy in my feet and legs, causing them to feel like they're on fire. My Doctor and my Rheumatologist both still consider that something else is going on with me that they haven't figured out. I've been diagnosed with Non-Serum Reactive Rheumatiod arthritis. I think they've run every blood test known to man on me. At one point I and my OB-GYN thought I had Lichen Sclerosis, but the biopsy turned out negative. I still have episodes of what I think is the Lichen Sclerosis, but nothing like when I first went to the Doctor.
Most days my hands and fingers are swollen and hot to the touch, I hurt and burn in every joint and muscle. My neck and the back of my head is so painful I can barely brush my hair, or even lean my head against a chair or pillow. I had to cut my waist length hair because I couldn't brush it, it hurt to much to reach up - if I could even reach that far some days - and the shoulder impengment wouldn't allow my arm to move that far. My husband got frustrated when he tried to brush it for me, I've always been extremly tender headed. I used to enjoy gardending, woodworking, reading, sewing, fishing, and just spending time outdoors. Now I can barely stand to go outside, the sun hurts my eyes and makes my head hurt, my hands are so painful I can't hold a book or sew for very long. We have cats and dogs, and I can't even hold them in my lap some days because of the pain. I don't sleep for over a few hours at a time, even with taking the Ambien. When I do sleep I have weird horrible dreams that are disturbing. It sucks when you can't sleep, can't type emails to your buddies, can't sit in one position for very long, can't ride in the car, can't walk up or down stairs, can't do the things you used to enjoy. Like someone said, you really have to mourn who you used to be, and come to terms with what you can and can't do anymore. When you can't even remember the names of your pets, your family,and your husband and children at times. Forget all that knowledge that you used to have, all that useless trivia that filled your mind and that you could spout off at the top of your head, all those words to songs and who sung them and what album they were on and what year they came out that you used to love, all gone. I can't even sing a song all the way through, its gone. The frustration of starting a sentence and forgetting the words you wanted to say, or having the sentence so jumbled it doesn't make sense, using words our of context. Why do I hurt so bad and for so long that I want to just cut off that offending arm or leg, there has to be a cure surely or something that will make it stop hurting. I keep looking for it, don't give up.
My renewed faith in God has kept me going through this past year. If I'm hurting, it means I'm alive. I'm breathing and I'm alive. Thank God. I try to remember that however bad off I think I am that there is someone else in this world that is worse off than I am, and I struggle with depression and panic attacks to not to let them overwhelm me anymore.
Hashimoto's Thyroiditis, ulcerative colitis, migraine, sleep apnea (central & obstructive) - use CPAP machine, heart disease, hypertension, hyperlipidemia, depression, morbid obesity, asthma, scarring (fibrosis?) in lungs, chronic rhinitis/bronchitis, FMS/mps, chronic tendonitis, plantar fascitis, gout (periodic), coccydynia, spondylolisthesis (L5), carpal tunnel, TMJ, chronic blepharitis, eye dryness, glaucoma (mild), insulin resistance, monoclonal gammopathy, rosacea, osteoarthritis, neuropathy, myoclonic jerking
daily meds - levothyroxine sodium, Estradiol, Medroxyprogesterone, Furosemide, Spironolactone, K-Dur asacol, Purinethol, carisoporodol, Benadryl, Chlortrimeton Rhinocort aqua, Advair, noritate 1%, Celexa, wellbutrin, zocor, cozaar, Tobradex, and then there are PRN meds...
I guess the easiest way not to miss something is just to start at the beginning. When I was 7 years old I had acute glomerularnephritis--a kidney disease that typically follows a strept throat and is characterized by massive amounts of blood in the urine. The glomerules are little tubes in the kidneys that help with their filtering function, they begin bleeding and the blood shows up in your urine. It might have been days until I told my Mom about it , but she had recently given me "the talk" and I was very excited because I thought I was beginning puberty. They would have known soon enough because I had massive edema. The reason I'm starting with this is that although it usually follows a strept infection--in my case it didn't, and it is probably the first sign of autoimmune problems I had even though we didn't know it at the time.
After that I had a pretty normal childhood. I was very active and had some growing pains, but nothing major. (I finally DID start my period when I was nine.)
At the age of thirteen I had severe abdominal pain, and was taken to the OR for exploratory surgery (they didn't have sonograms or anything like that, yet). They had to remove my right ovary due to a large hemorrhagic cyst, which ruptured on the OR table. This was most likely the beginning of my endometriosis.
At the age of 19 I had my daughter. During the pregnancy with her (I had mono during the pregnancy) I had a back problem that made it difficult to rise from the bed or a chair, but no other problems.
The back problem continued, but as long as I do my daily back exercises it rarely acts up. It was caused by the joint surfaces in my lumbar spine being uneven (large on one side, small on the other.)
At the age of 23 I had my son. No problems during that pregnancy.
I then had a long spell of abdominal pain and irregular periods, a miscarriage at age 24, and a hysterectomy at the age of 25, due to endometriosis. Today I understand that there are a variety of options with endometriosis--at the time I tried everything they had, but ended up with the hyster. This is of interest because of recent studies tying endometriosis to autoimmune illnesses and several other health problems.
At the age of 30 I had my left ovary removed due to five different kinds of cysts--some associated with the endometriosis--some possibly related to PCOS, but I'm not sure of that because they weren't diagnosing that back then.
Fast forward through periods of back pain and the start of joint pain and daily sinus drainage problems , migraine headaches and an exercise induced kind of asthma. Oh and untreated depression.
At the age of 43 I suddenly put on about 35-40 pounds and it was discovered that I was hypothyroid due to Hashimoto's thyroiditis. At that time my triglycerides and cholesterol went up, which is an expected side effect of thyroid disease.
Dec 1998 they removed my right lacrimal gland due to chronic dacryoadenitis with pseudotumor in my right eye.I went from full time to flex time around that time, and was spending all my days off recouping from my work days, which were becoming continually shorter and fewer due to this fatigue and frequent flu-like symptoms.
Sept 2000, at the age of 48 (well, one month shy of 48) I suddenly developed facial numbness and lightheadedness and began the long search for a diagnosis. I was at work when this began, and that is the last day I was able to work or drive a car. During the process of being diagnosed (including two trips to Mayo Clinic) they have come up with the following: asthma, fibromyalgia, and what I call my "mysterious other". That is most likely Lupus, but it hasn't completely shown itself yet.
Along the way my daughter was diagnosed with Mixed Connective Tissue Disease (including lupus) and Polycystic Ovarian Syndrome and major depression. She was diagnosed before I was. It took her forever to get a diagnosis. It only took me 18 months because she had been diagnosed before me.
My son was recently diagnosed with carpal tunnel, severe in both wrists, which could possibly be a precursor to autoimmune problems.
As of July 2002 I am on Social Security Disability.
My symptoms: constant lightheadedness, memory lapses and short term memory problems,I can't read more than a few pages at a time due to concentration problems and the constant need to refocus my attention and my eyes, occasional full-fledged dizziness, a bulging right eye with chronic redness and swelling of the lid (can't wear contacts or make-up), some vision blurring and a feeling of pressure in that eye when it flares, shortness of breath, occasional difficulty swallowing and hoarseness, severe abdominal cramping and diarrhea when my IBS flares, insomnia and what sleep I do get does not go through all the stages and is therefore unrefreshing, constant fatigue, poor endurance and pain just about everywhere. Oh and skin rashes--especially if exposed to the sun, mouth sores and I think my hair is thinning. The facial numbness comes and goes.
My treatment plan: Meds (Synthroid for the thyroid, Estrace as HRT, Zoloft in the AM for FMS, Nortriptyline at bedtime for the FMS and sleep difficulties, Robaxin for mild muscle spasms related to the FMS, Valium for when the spasms are worse, Naproxyn for when the arthritis symptoms are bad. I have tried various pain meds with no relief --which is typical with FMS)
Regular exercise---I go to the gym three time a week and do my workout (which is much less than I used to do prior to the FMS, and sometimes done with tears streaming down my face) everyday I do yoga (the gentle stretching kind) , everyday I meditate and do progressive relaxation, and I have made dietary changes (so far I've given up caffeine, increased my water intake, added more magnesium to my diet and am attempting to lose some weight.)
I am adding a regular massage to my program, as well as having an upcoming acupuncture appt.
Has any of this helped? Well, the symptoms are about the same (some are worse) but mentally I'm doing better since I have a diagnosis and am taking responsibility for continuing with my treatment program and adding to it when my Doc or myself find some new thing to try. Also the exercise is making me look better, which is a big mental boost. And I continue to wait for the other shoe to drop so the mysterious other (probably lupus) can be conclusively diagnosed and treated.
And of course in reading my story I remembered two things I didn't put in--first that I was rear-ended (in my car, LOL) in 1995--just before this stuff really got going and Mayo seemed to think that was related to the FmS and second that sometimes my scalp hurts so bad that I can't stand to brush my hair--it feels like my hair actually hurts.
RN Married with two grown, married children and two grandson's ages 8 and 6. And of course my lovely dog Angel.
name is Robyn and I'm 53. I live in wonderful Australia but love
travelling anywhere to learn more about people and cultures. I'm married
to Robert. This is a second marriage for both of us. We were married
last year after living on my own for 14 years. I have two grown-up children, a
daughter who is 32 and a son who is 33. I also have 2 adorable
grandchildren, Jared who is 4 and Jessica who is 2. Robert also has two grown-up
daughters who are now part of my extended family. I've recently been medically
retired from teaching.
1974 I had a partial thyroidectomy for hypothyroidism.
Ten years later I had to begin taking thyroxine. My blood tests show that
my thyroid levels are fine on this medication.
I'm a positive thinker and believe I can get on top of these symptoms. I've done it before and will find the answer to this "challenge". I don't believe there is just "one answer" but that each of us has to find the combination that works in our individual situations. I'm grateful for this group's contact to keep me searching and believing in a better future.
This page was last updated on 03/16/2005