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Discussion Starter · #1 ·
i have been going to my drs for many years with one thing or another and the running joke with my family was that i was some kind of hypochondriac. i have chronic back problems, sciatica, asthma, depression, panic disorder and agoraphobia that are still with me to this day. i have had miscarriages and a still birth.

i got diagnosed last month with lupus (sle) as i have spent the majority of this year in bed with so much pain in my joints. initially my dr though it was arthritis so i was sent to the hospital for tests.

imagine my shock at being told i have lupus. so okay on the one had i am glad i am not a hypochondriac because i dont care what anyone says, i know my body. however, i am now having to deal with lupus. i have told my family and they are not really being supportive (maybe thats because i am always ill). i got a steroid shot and was put on plaquenil; since then i have had 2 doses of uti, thrush and a mild kidney infection. i have to see a urologist at guys. the medication is giving me a constant headache and i have noticed that i am very panicky again and the agoraphobia that was not completely under control, is now coming back with a vengeance and i am scared.

how do any of you manage the s/e's if you are taking plaquenil. i am leaving it to the evening before i take it to see if this makes a difference. obviously i cant take certain meds because of my asthma so............i am extremely frustrated and fed up because most importantly, i dont want the agoraphobia to lock me in the house.

i am soooo low at the moment, i keep telling myself that things will settle down in a few months. i found a counsellor so hopefully i can talk it out. right now i guess i am just reaching out for some information/support/ideas regarding alternative treatments. stay well people :wink2:
 

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Hi Chilli and welcome,

I'm sorry to hear that you have had such a tough time these last few years. As you say, you know your body and knew something was not right.
None of us really wants a lupus diagnosis but as you say, it is a relief to get a diagnosis and taken seriously by the docs.

You are very early on in treatment and there is every chance that once you get the right treatment for you it will make a huge difference. Obviously the other issues you have are very important and mustn't be ignored. It sounds like you are being very sensible in taking steps to see a counseller. Being able to talk these things through is extremely important.

When I first started taking pred, I got a whopping cold, the first (and last) in eight years, then a UTI, then cadida (from the meds for the UTI). Once my body got used to the meds I was fine and now have gone back to my usual, no cold self :lol:

I don't know about the side effects that you describe with plaquenil. Other than heart burn when I first started taking it, I'm lucky not to have any side effects from it. My headaches have been constant for years, and it's only now that all my meds have kicked in that I am relatively free oif them.

The problem with reactions to meds is that they are just like lupus itself - very individual to each person - so it's difficult to say how things can go for you. Obviously you need to keep an eye on everything and make sure that your docs always know what's going on with you. Don't "suffer in silence"!! We often do far too much of that!

bye for now,
Katharine
 

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Hi Chilli

Im sorry you have had such a rough time with all of this, especially with so little support from your family :hugbetter: Like you say, the only positive thing is that at least your symptoms over the years have been validated.

Did you know that agrophobia is on the list of the alternative criteria for Lupus as penned by St. Thomas's Hospital.

8. Agoraphobia

Agoraphobia/claustrophobia are often present at a time when lupus disease is active. A history of these conditions can be protracted, lasting for months or even years. In many cases the history is not volunteered or the episodes are in the interim considered unrelated to lupus.
Here is a link to the post in question. Its at the top of the Not Diagnosed Yet Forum

http://www.thelupussite.com/forum/showthread.php?t=63963

When you mention side effects from Plaquenil, do you mean that you think they are increasing your agrophobia or is there something else? If you mean the gastric side effects, then certainly Plaquenil is well known for filling one up with gas. It can be quite uncomfortable and a little bit embarrassing breaking wind all the time:blush: However the good news is that this side effect settles down after a while once your body adjusts to the medication.

It seems more likely that the agrophobia is linked to your disease activity. Have you mentioned this to your doctor? I think it would be a good idea. I dont know about treatments for agrophobia but I believe that cognitive behaviour therapy is something that is known to help. Perhaps you could ask your doctor about this?

I hope you can get this under control soon Chilli because phobias are a difficult thing to deal with. I'm sure you feel over-loaded with stuff right now but if you had a good friend that you could confide in who might help you take some 'baby' steps away from the house and who would make sure to bring you back immediately you got panicky I think that would help a bit. You're right in wanting to fight it. Thats the first big step. Its far too easy to give in completely to phobias and then they end up ruling your life.

The very best of luck with whatever you decide.

Take good care
Joan:rose:
 

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florie
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Hi
I am sorry about how you are feeling, but how can you not feel what you have explained. You have many conditions and some of them are mine too. I have bi-polar,anxiety,depression and argrophobia along with lupus sle.
The plaquenal has helped me a great deal and controlled my lupus flares. The arthritis i have in my hands come and go. My mental conditioon has not really improved and i get the same feeling with my reg.dr that he thinks it's all in my head. He actually told me that i have physcologial problems! that is not fear or helpful for him to say. I told him i am not a hypocondriac and cried.
when i first started on the plaquenal i had some headache and mostly upset stomac. My Rhuemy lowered the dose to 200mg per day. I have been on the med for over 2yrs and there are times that it makes me queezy but then passes.
Counseling will help you.I am scheduled for it myself because mentally i don't want to go out and have to force myself. My appetite sucks so i am drinking nutritional drinks. My weight has dropped from 116lbs.to 107lbs.
My family really doesen't understand my lupus or mental conditions. My own mother says i bring things on myself! My fianc'e is wonderful caring and understanding.He knows me well and understands what i am going threw.
So just take care of yourself even though it gets frustrating and build a good one on one with your counsouling . You are not alone and i understand your feelings.
Hugs:hug:
florie:rose:
 

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:) Hi Chilli, and a very warm welcome to this site. You will make a lot of friends here, and get a lot of help and support. I was glad to here that you were on plaquinel, but it sounded like you are taking it once a day. Is that how your dr. started you out? Plaquinel is usually begun in a dose of 200mg in the A.M. and 200mg in the P.M. They say it usually takes 3-6 months for it to kick in, but on me it took 9 mos. and on other people it has taken only 4 mos.
So you can see how it hits us all differently. You are doing a very smart thing for yourself by going to counseling and talking it all out, that alone should help you tremendiously.
Was it a Rheumatologist that put you in the hospital and dx you? just wondering. Do be well and keep posting.:wink2:
 

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Welcome to the forum chilli
I am sorry your diagnosis has taken so long and involved so much suffering.

We all react slightly differently to medicines and it is possible that the Plaquenil is both causing the headache and increased anxiety. One of the reasons it is often helpful for fatigue is its stimulating effect on the central nervous system. Most people have few problems with Plaquenil apart from some initial gastric upsets.
As for the medicine, the first thing to do is reduce the dose assuming you are on 400mgs a day, and see if you feel any better. Another option is to stop taking it and see if that makes a difference then start again very slowly even only taking 200 mgs every other day. Plaquenil takes time to work so going very slow initially doesn't make that much difference to its benefits long term.

However, I conclude that there is rarely a simple explanation for things. Validation is good but getting diagnosed is the start of a whole new chapter that is usually far from easy even when you welcome getting an answer and look forward to feeling better with a bit of luck. There are innumerable stresses and challenges as well as plain fear about what the future might hold.

My major depressive/ anxiety attack came a couple of years before diagnosis. I was helped through it with anti depressants and "desensitisation", learning deep breathing auto hypnosis calming techniques that stop the panic in its tracks after practice, and break the habit of the phobic response.
Then I went to a day centre where we were helped little by little to venture out and had the encouragement of a group with similar problems. We also talked in a general about why these fears develop so we gained better insights and learnt to deal better with stressors, became empowered in fact. It's a bit different for each person but there tends to be some common features. I wish you the best of luck in learning to deal with the panic - agoraphobia is surprisingly common on this board.

Family are such a big problem for most people I am often rather glad I hardly have any. You might find the Letter to Family and Friends and Letter to Normals useful. They are both pinned at the top of the Family and Friends section of the forum.
I don't know why people are so beastly to the ones they are supposed to care about. It's especially hard when you are dependant on these ugly people for help with daily living and worry what repercussions there could be if you tell them what for. Having a disease sure brings out the best and the worst in people.

There's a lot we can do for ourselves to improve our general physical and emotional health such as diet, getting some exercise and making sure we find some pleasures, prioritising activities and making life as easy as possible but there are no 'natural' medicines to substitute for the pharmaceuticals. There's quite a lot of discussion about this elsewhere on the forum

I hope you'll find the forum an excellent support and source of information

Hugs
Clare
 

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Discussion Starter · #7 ·
thank you all. i am quite overwhelmed but grateful for you all taking the time to reply. had a real bad day on saturday and some dark thoughts but today i feel a little better and in control.

it will take some time for me to get my head around this and get into the 'swing' of things. at the moment i am more concerned with trying to keep down the agoraphobic and panicky feelings that i am getting again. i get so nervous and when i am out i cant slow down and seem to be doing everything super quick which is wearing me out. also....and im no expert.....i have got a ravenous appetite and i can only put this down to the excessive amounts of adrenaline my body must be releaing in response to the fear i get when out?????????????? either way i have been over doing it eating wise because i end up feeling weak (bec.lactic acid release???) and food quells that...........thank you all though, i really appreciate your comments.
 

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Dear Chilli, I just wanted to welcome you. Some Docs. think that a lot of anxiety is common in the first years with lupus. My worries have become much less over the years.
Maybe yours will too. I know it is not easy.
x Lola
 

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Discussion Starter · #9 ·
thank you. i have re-read your posts and to answer some of your questions:

diagnosed by a rheumy, although my dr had sent me for bloodtests months prior to check for arthritis and saw something in the results that she didnt understand.

the plaquenil is increasing my headaches and panic attacks and agoraphobic responses although i have always suffered with headaches/migraine

am on 200mgs once a day, which i usually take at night but reading what 'clare t' said is making me rethink, as i have been going to sleep later ie;earliest is midnite but as late as 3am and wake up early so am averaging about 4-5 hours sleep. however, i do have bouts of insomnia

the wind problem i am beginning to get......really exacerbated by eating grapes/plums !!!!

woke up this morning and my left palm was a bit itchy. by the time i had my bath i noticed a rash developing on my left palm which looked red with raised spots. applied some aloe vera gel and it seems to be going down now. how weird is that????????

why am so ****** hungry all the time????? i think it is may be due to the panic raising my adrenaline or could it be that steroid shot i had 3 weeks ago. i remember being on steroids when i developed nephrotic syndrome (kidney disease) years ago and feeling hungry all the time!!! Hmmmm or is it just an emotional reaction???

i have had cbt to help with the agoraphobia and panic disorder but couldnt do the breathing techniques because i am asthmatic and dont wanna trigger an attack....and do not take antidepressants becasue of the s/e's so opted to self treat with b complex (not anymore) and taking it one day at a time.

i have no doubt that everything will settle down eventually but in the midst of all this confusion/symptoms i feel overwhelmed and extremely out of sorts. i just wanna catch a break and get some relief.............and be able to exhale fully.

it looks like beautiful day today even if it is freezing outside. im going to go for a walk and get some lunch. keep your fingers crossed for me !!!!!!

does anyone know of any support groups that i can attend meetings in london?
 

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Hi Chilli,

I just wanted to thank you for your reply to my post . . . I had read yours and wanted to get back with you. I can relate more than you know. I have a history of asthma, IBS, Chronic Fatigue (positive Epstein Barr's), Cervical Cancer, Gallbladder removal, and West Nile Virus (comfirmed case). So, please know that I understand what depression, panic, and anxiety can feel like. At its worse it can seem like the very air around you is as ill as you are and can be very intense. I cannot tell you what to do as far as your medication goes . . . but when I first started taking Plaquenil . . . I got the "jitters" you might call them, so, I had to lower the dose and work my way up. Please check with your doctor if this is what you might consider doing. Also, know that steroids can cause significant side effects that can have an impact on you mentally as well . . . again, it might be worth talking to your doctor about. It's a rough thing to deal with and find comfort in knowing your not the only one to have face the "hypochondriac" stage of this illness. Approximately 45% of individuals with serious autoimmune diseases are ranked in there initially . . . those are pretty high statistics and we are certainly not alone. Find comfort in knowing and doing the best you can . . . as you said you know yourself. I've always had an artistic side to me so when I had to give up nursing full time . . . I took to painting . . . I absolutely love it. I have a friend with lupus and she does incredible bead work - it's amazing. Bottom-line, for me keeping as active as I'm able (with my painting and other things) is such a help. It seems if your mind is occupied somehow it helps cope with the anxiety and depression. Anyway, take care of yourself and remember this is a great place to vent, unload, cry, whatever it takes . . . if you need it. Again, take care, Roberta
 

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Chilli,

Has your doctor tested for Antiphospholipid Syndrome? I don't doubt you have Lupus, but some Lupus patients also have APS. APS can cause miscarriages, migraines, panic attacks, etc.

If you are getting unexplained rashes, consider two possibilities... Are you taking name brand or generic plaquenil? Do you have any issues with sulfates? Plaquenil caused me a great deal of trouble because of the sulfate in it. (This is not the same as being allergic to sufonamide or sulfa drugs.)

audi
 

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First I want to say I went through the hypochondriac thing too, the first time a doctor told me things were all in my head, he did however send me to an internist who diagnosed me with a confirmed case of Lyme disease, that was years ago, but what I found is that experience started me on a long road of questioning myself and what i was feeling, this self-doubt was something that I still struggle with and try to overcome. In fact the way I was diagnosed with SLE was my nurse practioner asked me what I wanted to be tested for (I have had several tmes when lupus was a poss. diagnoses), I told her lupus, and well here I am. Doctors, some of them anyway, seem not to take into account that as people we know when something isn't right with our health. I too struggle with anxiety and have for years, I have also been diagnosed with major depressive episodes, post traumatic stress disorder, and borderline personality disorder...the latter being helped a great deal by behavioral therapy, the depression by a vagus nerve implant, and I do take some psych. drugs. I also see a therapist on a weekly basis. Since my family, in general is not very supportive I find that talking things over with my therapist has been a great deal of comfort and help. As far as plaquinel goes I have some of the gastric problems but they have settled down some since I have been taking it for awhile. It does take some time to find the right med combonation for each one of us and of course that can change often. I too had an UTI, then mouth ulcers, and several other problems, but they are starting to clear up. If I had to get some points across in this post they would be, you are not alone and you can find support here, and trust yourself when it comes to how you feel symptoms wise, you know your body and mind and are the expert on that. Take care of yourself and feel welcome to post whenever you need or want to. Karly
 

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Hey Chilli

you hang in there.

My family are always trying to do one better on each other when it comes to illnesses. At the moment my mum has bad junior rheumatoid arthritis and is off work.

I dont often get any support or encouraging words and for a few years i never felt right....afraid i was a hypocrondriac.

Even when i get bad symptoms i always get a look off my mum as if to say "well, i'm still worse" and she is. lol. cant win in my family.
 

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Discussion Starter · #14 ·
LOL.....i sooooooooooo know what you mean freakyschizogirl. i live with my cousin and i cannot even have a headache on my own.....she will match me blow for blow!!!!!!!!
 

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Dear Chilli,
Sorry to not have read your note until now. When after several decades of various physical problems, with various diagnoses, I was diagnosed with SLE. On coming home, despite my shocked numbness, I told my wife the good/bad news. She replied, "You should get a T-shirt saying 'I TOLD YOU I WAS SICK!'" She suggested I wear it to the offices of certian MDs and to a few old acquaintances.
All the best in living happily with Lupus. It can be done!
Douglas+
 

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I'm so glad that I'm not the only person who feels like I'm a hypochondriac anymore. I've suffered from anemia since birth, headaches, fatique (I hardly had the energy to patricipate in sports in school) and various other inexplicable syptoms. I've been tested for everything thusfar, except for Lupus.

I recently discovered that my grandmother was diagnosed with Lupus shortly before her death due to kidney failure. I would do anything just to know that I have not been imaging everything all these years and finally have a name for what's ailing me. It's better knowing than futiley searching and searching and never finding an answer. I'm still waiting for results.

And yes, I too will be wearing a t-shirt that says " I told you I was sick" just to show to my ex husband who used to tell me I'm constantly complaining.
 
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