I am a 39 years old woman and seeking for advice with my health issues.
I am sick for 3,5 years now and this has caused a significant reduction in my and my husband’s quality of life. Since approximately 2 years, I can only work or do other things for up to 4-5 hours a day and now facing getting fired and maybe getting unemployment disability insurance (unfortunately not having a “good diagnosis” for that) by the end of this year. Before I got sick I was a workaholic and I was sometimes called a bouncing ball in terms of energy
Last year I got diagnosed with undifferentiated connective tissue disease ("UCTD") by my rheumy and started Plaquenil (200mg/day). Last few weeks some of my health problems aggravated:
Fatigue. Regardless of how much I take rest, as if your body still has to recover from one or more marathons. Fatigue can come suddenly in one fell swoop over me, I'm in a blow violently sick. Then I must find my words, talk without articulation and have a sense of thick tongue. After 10 minutes of walk I have to grasp oxygen for 5 minutes.
Muscle weakness and stiffness and muscle cramps in feet.
Very light sensitive, in a few minutes of sun exposure even through a window I get a butterfly rash or half butterfly rash. These rashes go away in a couple of hours. Before this I loved sunbathing.
Since a week red inflamed(?) cuticles and very sensitive nailbeds. I can see some nail cuticle hemorrhages with the naked eye. Also some times daily my nails (fingers and toes) get cyanotic (purple or three colored). I also noticed a little bump on my big toe. See picture of fingernails.
Full Eustachius tubes and painful ears plus vertigo since almost 3 months
I suspect UTCD now turned into Lupus and or Vasculitis (possibly Wegeners) and I’m terrified for Scleroderma.
Thankfully I was able to make an appointment with a rheumy (not mine, she is on pregnancy leave) for next Thursday but I’m a very curious if these symptoms are recognized by some of you as indeed being Lupus, Vasculitis or ...?
For your information, other health issues and test results I have since I got sick 3 years ago:
unwanted loss of approximately 22 kilograms (now weighing 55 kilos with 1.75mt length) and can no longer gain weight. Dietician now subscribed me medical food (protein shakes) and weight loss now stopped.
migraine
malfunctioning pancreas (I take pancreatic enzymes for digestion)
inflammation in my ileum (small intestine) and canker sores in my mouth (first diagnose was IBS, then Crohn’s disease and now unknown but must take Entocort otherwise I get a flare)
subfertility, childless since 2008
Multiple fibroids in uterus causing extreme pain and daily bleeding for almost a year before having found a gynecologist who helped me with Esmya, currently no gynecological problems .
chronic sinusitis, nose bleeds, nose crusts
midcarpal instability (initial diagnosis was Sudeck’s disease)
lactose intolerant, and very sensitive for wheat and gluten; now eating glutenfree and diaryfree
slight wear in low back and neck (MRI showed brains and spinal cords made after suspected MS)
at various blood tests very high ANA (after very high titration) and positive ANCA, sometimes slightly elevated inflammation markers, vit B12 and D at minimum level of range even though taking vit B12 and D supplements, slightly elevated liver markers.
I had two urine tests (one sample, not over a day) and had once protein urine and high Dysmorphic erythrocytes
lower back pain and stiffness after about an hour of walking or standing (this is the only complaint I have since I was 15), stiffness and pain than forces me to lie or sit down .
Sometimes inflammatory pain in fingers and knees, but only for some hours or some days, then it disappears.
I have very often a slight increase in temperature (37.7-37.8 degrees Celsius, ear temp.)
My blood pressure is often quite high sometimes 170 or 140-150 over 90-100. I started measuring after my first vertigo attack.
Very often sore throat and often laryngitis.
I get infected/sick easily.
I cannot eat normal sized meals anymore because I feel sick right away and get abdominal pain.
Very bad skin, poor wound healing (the wounds of last laparoscopic surgery were closed almost after three weeks, my GP tried removed the sutures after two weeks...was not a good idea), I easily scratch and bruise, I have white pigmentation on lower legs and stretch marks on upper and lower legs. Skin biopsy of my upper arm yielded nothing.
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Patricia2015
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Patricia2015, my love you have so much going on don't you.
Majority of your symptoms I have seen mentioned by different people on here, and they have been diagnosed with Lupus. So I think you will be diagnosed by your Rheumy as having it. But as with all illnesses there are different strengths of the illness.
I have been diagnosed with it also, but they say I only have it mildly. But I too suffer with fatigue, painful feet, osteoarthritis in both knees, severe itching on arms, lesions on arms, and the butterfly rash on the face. I am also taking the hydroxychloroquin for lupus that you are taking. Along with all that I have psychotic depression, chronic pelvic pain for which I am taking morphine for. So I really sympathize with the people who have it internally too.
So as you can see everybody's illness can be different but they all have the similar symptoms that Lupus is made up of.
I really hope your appointment with the Rheumy gives you the answers you are looking for, and come back and let us know how you get on.
Unfortunately illnesses like this take there toll on relationships, and mine broke down when I just had the depression. He would have run a mile earlier if he knew I was going to be diagnosed with all the rest.....ha ha
But it sorts out who can put up with the sickness and in health. If they can't take the strain of an illness then in all fairness they are not worth it. I'm 43 and unfortunately living back home with my parents, due to not being able to work I just cannot afford my own place.
Good luck with everything Patricia and I hope everything works out for you.
Unfortunately I was not seen by my rheumy last week as she is with leave now but by a student specialist. She sent me for a nailfold capillairoscopy, she didn't do any other test. The capillairscopy is planned over a month, as all my nailbeds are inflamed (also on some of my toes) and I see micro hemorrhages with the naked eye I'm worried that that takes too long if I have scleroderma. But maybe it is lupus as not only my nailfolds hurt but also the fingerpieces between the first and the second knuckles.
I just cannot understand how reluctant some doctors can be, as if our lives are not that important :-(. After speaking to 8 different hospitals I managed to get an earlier appointment for over 10 days and 5 days after that I hear the test results from the student specialist. Now the waiting starts (again).
Yes, illnesses like this take a big toll on relationships and I'm very sorry to hear yours broke down. It is easy to say now but he did not deserve you and you are better of without him.
My parents and mother in law don't know what it is to be chronically ill and my mother states it is all just an allergic reaction and it will pass. Being chronically ill means relying on the people around you and it must not be easy relying on your parents at the age of 43 but I hope this will be temporarily and you will be able to afford your own place in a while.
It sounds like you have a lot going on. georgie63 has already given you a good response. It does sound lupus like. Let's hope between your bloods and your doctor, you get a firm diagnosis. This will at least enable you to move forward and learn about your condition and how to treat/deal with it.
I was diagnosed with Subacute Cutaneous Lupus (SCLE) which is a sub group (in November 2013), consisting of Discoid and Systemic symptoms. I have the lupus butterfly facial rash, I am sun sensitive, I've had a form of tendonitis on both wrists lasting 5 months, memory problems, I get sores on my chest and back - not like zits or boils - just swollen painful lumps, I get scabby sores on my head, nasal sores and sores around my mouth, I used to get cold sores but now I get just swollen lips, I have suffered from depression, cluster migraine, migraine, funny hot flushes in my legs, my feet and ankles have turned red, swollen lymph nodes, chest pains, nausea, dizziness, bowel troubles, slight weight loss (I think mainly due to the nausea and not being able to face eating), my nails are terrible and I am prone to fungal infections, I have lost hair, so thinning and small bald patches, plus over the last 2 years my hair colour has changed a few times. Etc, etc. The worst symptom to deal with is the fatigue. I am 40 now and have 3 children, aged 10,9 and 7. I nap most days and am still asleep by 9 pm every night. I always feel like I could go back to bed and sleep for the day, no matter how much sleep I have had. I struggle to be as normal as possible for them and feel guilty most of the time that they don't get more from me. I don't want them to just remember me being ill.
Anyway, I also have osteoarthritis in my hips and am trying to delay replacements as long as possible, I have varicose veins and was yesterday diagnosed with varicose eczema. My GP asked if I had considered treating these. I struggle to deal with the rest of it and just cannot face more appointments and procedures right now.
Re: Vasculitis - When I saw my Rheumatologist last summer, I told her how I had recently worn a pair of sandles with an ankle strap and found that since I had last worn them (before starting hydroxychloroquine 2 x 200mg a day) I was able to do them up 4 holes tighter than I had worn them before. She said that I had probably also had slight vasculitis. Such a mixed bag of symptoms. I should have questioned her further but there is always so much to remember at these appointments. I guess with the monitoring at rheumy appointments and with the blood this is all monitored plus you get so in tune with your body, you know when something has changed.
I guess all these things are related with me. My form of Lupus (which is diagnosed as mild but has a huge daily impact for me) , osteoarthritis, varicose veins, varicose eczema and slight vasculitis.
I ordered some books when I was diagnosed from Lupus UK and have found the support I have received from them and this site, invaluable.
I hope I haven't rambled too much and you can make sense of what I have written. I guess because we all have such different symptoms it makes it hard to get a diagnosis sometimes.
I wish you well and hope you get some answers soon.
Thank you too for your reply and it did made sense to me
Your "mild lupus" symptoms seem pretty heavy to me Reading all you have to cope with i can imagine the huge impact for you.
How did you get osteoarthritis? Is because long term prednison use?
I haven't heard from Subacute Cutaneous Lupus (SCLE) before but that seems very nasty as you also have symptoms that people can see.
Many of your other symptoms sound very similar to mine but I don't have hair issues (yet). However I do notice that since 2 weeks my scalp is very sensitive and sometimes very itchy.
What a blessing to have three children (unfortunately we didn't receive this blessing) but not easy if you are chronically ill. I found my fatigue very difficult to explain to other people even with the spoon theory they seem to understand for a while but forget it easily the next time. Your fatigue is very similar to mine.
Although I'm no mum (only to cat children I would definitely not feel guilty about not spending more time with your children because of your illness. Children do understand more than many people think expecially if they get a bit older as your children are now. Being ill is something you suffer but your children don't notice as such. Just like children in a family where one child is disabled. If you ask the "healthy' children what they think of their "disabled" sibling they don't even notice his/her disability but only the positive things, the things their sibling can do.
Unfortunately I was not seen by my rheumy last week as she is on leave now but by a student specialist. She sent me for a nailfold capillairoscopy, she didn't do any other test. The capillairscopy is planned over a month, as all my nailbeds are inflamed (also on some of my toes) and I see micro hemorrhages with the naked eye I'm worried that that takes too long if I have scleroderma. But maybe it is (systemic) lupus as not only my nailfolds hurt but also the fingerpieces between the first and the second knuckles.
I just cannot understand how reluctant some doctors can be, as if our lives are not that important :-(. After speaking to 8 different hospitals I managed to get an earlier appointment for over 10 days and 5 days after that I hear the test results from the student specialist. Now the waiting starts (again).
Patricia2015, thank you for your very kind, supportive words. Yes, I am lucky to be blessed with my children. They make me smile and proud every day.
Just to answer a couple of things, I think my Lupus is termed Mild, as it hasn't effected my internal organs, fortunately for me. I am just guessing though. I have never actually asked.
Also, my osteoarthritis isn't from over use of steroids. I have only ever had 2 short courses of these to clear up my photo-sensitive rash on my arms, before my lupus diagnosis. My Consultant Orthopaedic Surgeon thinks that my hips aren't caused by my lupus but the lupus is now aggravating my hips.
Such a mixed bag of symptoms. I have been told that I was just unlucky enough to inherit the the genes for lupus and the genes for osteoarthritis.
Please let me know how your cappillairyscopy goes.
Av used esmya tablet. Finished 1st course of 3 months. Had my period which was really heavy.1 month break then started 2nd course which am bleeding daily even after period.lots of pain.am fed up
I have just finished my fourth Esmya course of 3 months because every time the adenomyosis came back after a while. But after each course later. So after the first course in 3 months and after the third course in 6 months. So in January/February I will get my period again and will see in 2017 how long it will take this time that the adenomyosis will grow back.
Esmya is now approved for multiple courses but make sure to be under the control of your gynaecologist with each course.
Has any of you had a biotoxin test done or diabetes tested or tested for Lyme you can still be prediabetic if your blood test is elevated have you had thyroid t3 and t4 check can ask for a ca3/ca4 blood test that will tell if you have toxin in body or if you have a lupus
Patricia — I really understand your concern about the scleroderma symptoms. It is not anything I know much about but I know others will be able to add something valuable. Clearly, the doctor was concerned about the inflammation on your nails too.
It might be helpful to educate yourself about UCTD. Go to HSS undifferentiated connective tissue for a simple and visual explanation of the condition. I and many others have this diagnosis. Some are more lupus-like and some have more symptoms consistent with the other connective tissue diseases. I understand also why you are concerned about evolving into a defined connective tissue disease. Your doctors will continue to watch you closely. After a few years, most people with this diagnosis do stay in the diagnosis. As with all systemic autoimmune diseases, the key is on the symptoms and treating those properly. You seem to be functioning at a much lower level than prior to diagnosis and you are feeling out of breath. You might want to address these issues specifically with your doctors.
Wishing you a good result on your test and hoping you feel better.
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