very sick,not diagnosed,looking for insight
Posted , 12 users are following.
Hello guys, I want to apologize in advance for the long post but I would really appreciate some insight and help, I am struggling really badly.
I am a 26 year old European woman and have been very sick for a year now. It all started last November after my gynecologist gave me a shot of progesterone ( due to high prolactin levels and my period disappearing). The very next day I woke up in panic,covered in sweat,felt like my head and body were on fire and with extreme nausea. I brushed it off to an allergic reaction. But then I got sick with what I thought was the flu-sore throat, sinus pain and chills. These 'heat attacks' continued almost every night ( still some nights i have them) and all day long I would feel as if I had the flu.I had staph bacteria in throat and nose and was put on antibiotics,they did nothing, changed a lot of antibiotics,nothing changed,but the cultures became negative.After a month feeling like this I developed joint pain in almost every joint in my body,BONE pain in my arms and legs,sometimes in ribs, low grade fever, stiff and achy muscles,still had the sore throat. I became bedridden because I was very very weak,fatigued, in pain. Visited a lot of specialists, nothing was ever found except slightly raised ESR levels, ANA, Anti CCP, RA factor were negative at that point. My health continued to decline,I got weird looking acne all over my back and face but doctors brushed it off to hormonal imbalance. For 2 weeks straight I had a sunburn redness on my face but my ANA was negative so doctors assumed rosacea. And actually I did put a rosacea cream on my face and it worked as long as I was putting it on. Still bedridden, my whole body hurt,even my veins all over my body became prominent and hurt,my joints started cracking with every move. I have so many symptoms that most doctors will say to me 'Go visit a psychiatrist,there is no illness with so many symptoms" . After 6 months of feeling very sick and so many new symptoms ( hair loss, poor circulation,muscle twitching and weakness, internal tremors,had painful lymph nodes under armipts without them being swollen but gone now, constant flu like feeling, low grade fever, chills,joint pain, vein swelling,sore throat, extreme weakness,dizziness, blurry vision, brain fog, insomnia, burning palms and feet, rashes on my hands that will come and go withing 2 hours time,mainly on my knuckles and sometimes on my arms) I also started getting blue nails and numbness in my fingers. Had all kinds of neurological tests, MRIs, blood vessels imaging ,heart,lungs checked..everything fine. Till I decided to do my own testing again and that time my ANA was positive:1:320. Anti CCP positive too ( for rheumatoid arthritis) so I was hospitalized in the rheumatology department to get a diagnosis. At that point my anti ccp was borderline and ANA was negative, they did capillaroscopy and diagnosed me with just Raynaud's . I had a skin biopsy,also called here 'lupus band test' and it was inconclusive, as they said:'' A little immunofluorescence here and there but not convincing enough for a diagnosis.''Also, my kidney creatinine in 24 hour urine was low, so my kidneys are not functioning very well, and blood creatinine is on the upper limit. But it wasnt't 'bad enough' to be taken seriously.
For the last 6 months I developed a very bizzare and scary symptom. I can't breathe because I feel as if I have an 'internal corset' around my ribs. This is a 24/7 feeling, I have shortness of breath, extreme weakness in my upper body muscles from that, bloated belly,extreme sweating. Also from that thightness in my stomach I developed daily diarrhea and acid reflux to the point I can't eat anything without having the nausea, diarrhea and 24/7 struggle to breathe. Had lungs checked with an x-ray and spirometry, everything is fine there and my diaphragm is not paralyzed thankfully( because it feels that way and it was a struggle finding a doctor who would not laugh at me and actually check my diaphragm with ultrasound). I also had a CT scan of abdomen with contrast,ultrasound and barium swallow x-ray which revealed only GERD. It continues to get worse, as if my internal organs are swollen, can barely breathe, even when not moving still can't breathe cause something is pressuring on my diaphragm, still have daily WC problems and constant nausea.It also started I guess pressing on my heart cuz I started getting heart palpitations that go up to 160 bpm.And my heart rate is always raised since I got ill last year. My resting heart rate now is 80-90,when I get up on my feet it goes up to 130. Another new symptom is for the last month and a half I have constant headache,which started with severe vertigo but the vertigo went away,now just have the constant headache,again MRI was done-nothing there, just found the vestibular system was affected a little.Things like ibuprofen do nothing for the headache. I keep getting worse but my ANA is now 1:100, other immune tests like DS DNA, anti Ro, anti Smith and etc. are negative, C3 and C4 withing normal ranges, CRP normal, slightly raised leukocytes and raised ESR, normal liver functions,blood sugar and no infections found. I am sorry for the very long rambling and excuse me if my english is not perfect, I am from Bulgaria, but I do feel like I am dying. I wanted to ask you a few things. Firstly, can it really be Lupus because I have a lot of text book like symptoms, but for me it is not in flares. Some symtoms are in flares, like the low grade fever, I can have it for 2 months, then not for the next month, and burning sensation and rashes are in flares but everything else is a constant thing.Also, for me it wasn't gradual like for people with lupus,having joint pain for a year then something else, for me it all just crashed on me and made me very sick. And I keep getting worse, I read people with lupus have flares and once the flare is gone they feel better,I don't get that. I feel awful all the time, I can't function or walk my dog, not due to the pain ( the pain is bearable) but due to the very sick feeling,breathlessness and weakness. Are there people with lupus that have similar symptoms that are constant? And do any of you have the weird breathing/thight feeling around ribs and what can it be?-that is the most frustrating symptoms I have and I am very scared. I really hope someone will read all of this. I am sure I forgot a lot of symptoms. The progesterone shot was the trigger for my unknown illness and from what I read, lupus is involved with hormonal/metabolic processes because it's no coincidence that mainly women in childbearing age get it and it gets worse after giving birth. That is the main reason I think I might have it. Btw, I forgot, my prolactin levels have been within the normal ranges for the last 8 months but still not regular menstrual cycles.I even had several blood cultures,so many tests for all kinds of viruses,parasites,tropical illnesses,all is negative. Overall I feel very toxic and poisoned ( I know I am not poisoned just feels that way)
Thank you in advance
0 likes, 49 replies
balia9595
Posted
ohh.. I can't wait for the 27th, really really hope this time this rheumy won't brush me off,I am soooo sick. I was watching a lecture about lupus on youtube and the doctor speaking said that lupus can affect the diaphragm and it goes hand in hand with muscle weakness and the treatment is high doses steroids. I don't now if rheumy will believe me that I can't actually breathe when my spirometry results are fine. I am so used to doctors not believing me and telling me I am just anxios. of course, I am anxious I CAN'T BREATHE, my whole body aches and every time I stand up from a sitting position I feel like I am dying-heart plpitations,nausea, dizziness,weakness,hot flashes. Today I woke up with a sore throat again,painful lymph nodes and the pain all over my body, got very nauseous after eating,I am very shaky today and my pulse is through the roof. And one of my cheeks is red.Both of them tend to get red but one of them more,looks like sunburn but it's cold and snowy here. I also developped a pulsating feeling in my upper inner tight. I think there is a major vein there,really scared of thrombosis but for now don't have pain or swelling in that leg. Also, my headache ( or skull pain) is worse today with additional ear pain. I think the headache that is constant and started with vertigo 1,5 months ago is some kind of an inner ear virus that is not going away. Or something like Meniere's disease because I have a diagnosis of vestibular disfunction. Sorry for the venting I am just really frustrated and scared of every new symptom. Tomorrow I have to do the glucose drinking test for insuline resistance and I think I am gonna throw up. I remember a year ago when I did the test and it was in the beginning of my illness and didn't have sooooo many symptoms but was still feeling pretty bad , I got very shaky after drinking the glucose and nauseous, can't imagine it now when I have stomach involvement. Also, I am always so hot and sweaty, I am burning all the time, or is flushing the word. I wake up every morning stiff and with hit flashes and a feeling of a 'paralyzed' stomach and numbness all over body because I have been lying down and the blood was just not circulating right.
Another scary symptom I have is that my circulation is soo poor. I can lean on my leg, or my arm for no more than 10 sec and it gets numb for 10 minutes,even my butt get's numb when I sit down. Or I have to often raise my legs and hands because they hurt from not enough blood flow. Does Lupus/other autoimmune diseases cause circulation problems besides Raynaud's?
Sorry again for rambling. Please, be well!.
balia9595
Posted
I don't know if the link will open here it goes - https://scontent.fsof3-1.fna.fbcdn.net/v/t1.0-9/15492151_10209998780879726_3656109390295505160_n.jpg?oh=990ff192fe97470352455b7ebc0d30ca&oe=58F35F35 sorry for the gross close up picture
balia9595
Posted
sorry agan wron link, this is it:
https://scontent.fsof3-1.fna.fbcdn.net/v/t1.0-9/15589695_10209998826480866_5293441354239051822_n.jpg?oh=4c608a1516234e93d1dba38ea569afa9&oe=58F26C45
ihavenonickname balia9595
Posted
balia9595 ihavenonickname
Posted
kawhi02019 balia9595
Posted
Hi balia 9595
I know I'm replying to an old post but I share a lot of similar symptoms as you. For me it started with an injection from dermatologist.
I've been sick for about 6 months and started plaquenil month ago.
I have so many symptoms.. it will be too long to write them down all!
Joint and muscle pain but no swelling
Can'f function normally - due to weakness, dizziness and general ill feeling
Nerve pains and many more...
I wonder how you are doing now..
Are you on any medication??
I really feel your pain.. I hope you are feeling better
maya44676 balia9595
Posted
Hi...i think i get seronegatif lupus coz some docter from alergi said that.. and my professor diagnosis me get lupus SLE event that time my ana ritter ia not much but positive...and now from ana blood check is negatif i had remition...so i stop therapy kortikosteroid for my lupus...but ITS story' not happy ending coz event i remition my d serum so less i get insufisiensy and many deases coming to me start from TBC and past away then Niche surgery in my ovarium.and no tumor ini my hand ...i just biopsi and waiting the result from pathalogy...ur confuse same like me...but sister don't be panic..try face that with calm down event i also still don't know where is resourch of all this...i also get osteoporosis with fracture compressi in 5 on lumbal and vertebrate ITS added by time and i cant stop that.also i got osteoarthistis on my knee and feet...if my lupus had remition and recovery i should not face this...but i just can accept this wont think to much...just try enjoy my life with painfull...wish u can be strong and patient don't think to much about ur painfull just Obey ur docter...do sport and little exercise ...try duaa before doing everything....
margarida67433 balia9595
Posted
Hi Balia and others!
Last month I was diagnosed with discoid lupus and when reading your post I could myself had written it too.
I have had almost all your symptoms PLUS heel pain. I'm undergoing further exams next week. I think I also have Raynauds, Sjorgen and food intolerances. (Dairy, Gluten, Sulfur, Grains, Legumes, Nightshades...)
I'm very interested in knowing how you are today since I can't find nothing new about you in this forum. Hope you are better. All the best?
Margarida, Portugal
margaret22116 margarida67433
Posted
margarida67433 margaret22116
Posted
Thank you Margaret for answering.
I really would like to know about Balia's development. Every detail counts when reading about other people's testemonials....
StephanieBrooke balia9595
Posted
I feel your pain! It took just over 2 years for my diagnosis, which I now believe when hearing from others was quite quick. All my blood tests kept coming back negative apart from a raised ESR. I was also being tested for RA as my rheumatologist said I was showing all the usual symptoms. I got inflammatory bowel disease because of the anti-inflammatory medication I was on. It was actually mybowel specialist who 'hit the jackpot' so to speak. He was doing my bloods weekly and then my results came back positive for EVERYTHING. I was so relieved I'd got a diagnosis at last. Like everyone, I didn't want to have SLE, but I do. Unfortunately with SLE you can get negative blood tests time and time again. Even in a full flare, I've had negative results. I get the rash on my scalp, which gives a burning feeling and irritation. Because you've had some positive results especially your ANA should have told your Rheumatologist something. I'm not medically qualified but you appear to be showing all the signs of Lupus. Lupus is an illness that can mimic other illnesses, but with your blood tests being positive even just the once. and with your symptoms being as are, they should probably be looking at SLE. As I said, I'm not medically trained, just a fellow (Lupey), so know exactly how you're feeling and it's one of the most frustrating times when you know there is something seriously wrong with you, but not get the answers and support you need. I hope there's light at the end of the tunnel for you, and you manage to get the treatment you need.
fletcher96 balia9595
Posted
The depo f*cked me up bad too! It was part of the last of a long series of stressors that triggered whatever autoimmune disease I have! We almost have the same symptoms, except I have a bit less. Most doctors and nurses suck! I can't believe how many just chalk it up to anxiety, though I am glad I'm not the only one. Something needs to change with the sexism in our health care system! Depo is evil! Doctors and nurses poison our bodies then we get sick then get called crazy?! It's unbelievable and backwards!
Guest balia9595
Posted
Balia I'm wondering if you were able to find out what the cause of your symptoms was. There is a condition CIRS chronic inflammatory response syndrome also known as Biotoxin Illness. It can affect many systems in the body and cause many symptoms. Many of the symptoms can mimic Lupus. It took 1 yr to find out I had this. They first thought I had Lupus because I had a slightly positive test. My symptoms included...Brain fog , joint pain, headaches, stomach pain, chest pain/tightness, jitteriness, tingling, increased static shocks, difficulty remembering things. Most blood tests will come back negative which makes it hard for doctors to find it. Hopefully you have already found the cause of your symptoms if not might be something to look into.