Please...
My friend is only 32 is going on her SIXTH year of being in and out of mental hospitals, and her physical symptoms being completely dismissed...
If any of this sounds at all familiar please jump in:
I am about in tears writing this, if it's not this, well it's something very similar. I watch Mystery Diagnosis constantly trying to shed light on what might be wrong with my very dear friend, and finally today a lady was talking about "dunking all her food to make it soft" so she could swallow it!!
For years my friend has had to do this. She says she cannot swallow, it hurts. This caused her parents to put her in an eating disorder clinic. It did NOT help. She also has breathing troubles, especially after taking certain combinations or amounts of medication. She has been in and out of pyschiatric hospitals and has at times been refused soft diets because it is "part of her delusion". She is attending therapy for OCD. She has had trouble being around bright lights. She would wear a hat to cover her eyes and she could not read. This improved for a short period, but for the most part she has always complained about swallowing/eating, breathing, fatigue and her eyes. In certain settings, she has more trouble breathing, like if the ventilation is a certain way. Everyone thinks this is part of her delusion, and that she is mentally ill. Some people have refused to give her soft food, saying it is her delusion, and then she just DOESN'T eat. I have visited her many times and I am actually appalled by the lack of empathy in general by professionals for someone who is SICK, who does not feel well, who just wants someone to listen and HEAR her. I have ALWAYS maintained that there is something PHYSICALLY wrong with her that is causing these PHYSICAL problems that she is FEELING, and that now she *may* also have some mental illness on top of that, due to the very difficult life she has had to lead for the past 6 years, and from the numerous medications she has been on at one point or another. She does not want to live. She calls me often telling me that she may not be there tomorrow. I am so sad for her. We have been friends for decades. She is bright, talkative, funny, social... and now she is sitting in a mental hospital with no autonomy. Life is not fair.
Here is her background in chronological order from the time she got sick:
science teacher, working with chemicals. There was a mold issue, she had to deal with it.
Then there were wildfires. A window was left open, lots of soot got inside.
Thenshe was in a car accident.
Soon after, this all began.
Prior to that the only issues she had was mild depresssion and reflux.
She has used prednisone, not sure when.
She started to have trouble swallowing and eating.
Her parents thought it was an eating disorder, and I didn't really thing that was the problem but I thought she would get help, so I supported them/went to an intervention. She was only 90lbs, maybel less and she was not eating. It was very serious, she looked like a skeleton.
Eventually she was sent to the mental hospital. I think that's where she first was given Haldol. She has also been on Ativan, and now Zyprexa. She also takes a benadryl before she eats. She says this helps her be able to eat or take her medicine. She also seemed to get better and she was at a group home, but then got sick again. She has had muscle tremors (maybe from the haldol?) Those went away. She has had weakness, light sensitivity, trouble swallowing, can only eat, problems with circulation and breathing, feeling like she is going to die. Sometimes people just entering her "space" makes her feel sick and she will ask me to move, which of course I am happy to do. She fatigues easily, sometimes the noise level is too much for her. Her hair is thinning and brittle.
If you have any questions for me, I might be able to find out. Also her potassium levels have been very low in the past.
Any insight at all... she is very weary of testing at this point... how can I convince her to keep looking for an answer and not give up? Her parents attend NAMI. (Mental Illness groups. Also she has a relative that has down's syndrome. I don't know if that is of any medical help, but dont want to leave out anything.
Hello Ericswifey, welcome to Sjogren's World. I'm guessing you're here as an advocate for your friend, whom you suspect has SjS?
Unfortunately, once a patient is diagnosed with any mental illness, it's difficult to get back to the physical side and unearth any medical problems. Many people treated for years for mental illness were found to have thyroid issues that could be treated and resolved!
If you have any influence with her family or medical providers, would it be possible to have a full rheumatological work up, or at least an opthomalogical exam ordered? You mentioned that she has taken prednisone at some point, do you know what was being treated? In my opinion (humble though it is) since these issues came to light following episodes of chemical, mold and smoke exposure, and physical trauma from the car accident, there could very well be a physical cause and I can't understand why medical professionals wouldn't want to get to the bottom of it. Any yes, all these things can cause stress...but stress can trigger physical conditions as well as cause symptoms.
Learn whatever you can from the posts here, and the articles on the home page, and maybe share what you find with her family, they may begin to see that there could be a physical cause.
Hi Ericswifey
How wonderful that your friend has you as her advocate! My heart goes out to both of you because this is not an easy battle to fight. I think generations to come will look at the way we treat people in mental hospitals with horror. As Linda says, once people are diagnosed with a mental illness it's hard to get physical symptoms taken seriously.
Linda's suggestion of a full rheumatological work up makes sense - not just an appointment with a rheumatologist but the full array of blood tests, eye tests, mouth and gland examinations, maybe even neuro tests because either the chemical exposure and/or SjS could result in cns issues.
Please visit often and let us know how things are going.
Thinking of you - Chickpea
Hi Ericswifey - what a lovely loyal friend you are. So many of the symptoms you describe seem linked to Sjrogens. Before I was diagnosed, I was told I was suffering from anxiety but my symptoms were real physical problems and they caused me a great deal of anxiety!
I do hope you are able to find some answers, maybe on here or maybe elsewhere, but hope you have some good friemds around you too so you can get some support. It's so hard to be strong all the time for someone else. XX Ailsa
Hi Ericswifey!
Thank you for being such a good friend and advocate for your friend! She is very lucky to have you around. I agree with the others....try to see if there is anyway you or her family can get her a full rheumy evaluation or at least some basic labs that would test for autoimmune and other things. She should not be denied basic health care no matter where she is living or in what type of facility.
I'm so sorry that she has to go through this....many times once someone gets that "label"...its hard to shake it off and that is a terrible thing that happens to people who may need help in other ways.
Don't give up on her...and let us know if she is able to get some medical work ups and answers!
I do not know or understand just why so many doctors do NOT test for autoimmune diseases when it is so common. Well one form or another!
I went a while with them telling me they can't find anything, but just wanting to send me to pain clinic for management, It was a new concept at the time!
How are you going to manage something if you don't know what you are managing?????
I wonder just how many are put away that suffer from SJS because they LOOK O.K, but feel like crap!???? And because doctors fail to do a good evaluation??
Please continue to seek help for your friend! THAT''S A GREAT THING YOU ARE DOING!
Take Care!
Bernice
Thank you! I will definitely be reading up on subjects here! I do have the Discovery Health episode recorded to my DVR. I was trying to think of a way to record it to a dvd rom or something, then show it to her parents along with the foundation website and this forum. Or maybe print some of these things out and talk to the nurses at the mental hospital...maybe they can corroborate or shed light on some of the symptoms after reading the info...
What a wonderful friend you are. I do hope you can find out something that helps by searching amongst the threads, and that you can get some tests done by a rheumatologist. Good luck. xx