Severely depressed | Arthritis Information

 

Hi everybody, I'm sorry this might end up being really long...

My name is Tanya and I am new to this forum, I am 22 (23 this November), and I was diagnosed with mild RA, SLE Lupus, Sjogrens Syndrome, and Connective Tissue Disease in March 2009. The only drug I am on right now is Hydroxychloroquin, and I really do not like it all that much...It makes it very hard for me to eat, I just get sick to my stomach on it, I lost a lot of weight on that drug. I currently weight 115lbs and I know that's not enough for my age, at least I think its not, I am a small person, I only stand 5 foot 3 but I feel like I am too skinny. My rheumatologist told me to go off the drug for a little while to see if it really was affecting my appetite, and it was and now I do not want to go back on it. He also moved practices, 2 hours away from me which is too far for me to travel and now I have to be referred to a new Rheumy which I don't want because he was a great doctor, and I am afraid the next one I have will not be as caring and understanding.

I have inflammation all over my body, but the worst of it is in my hands. My hands hurt VERY badly every single day and it drives me NUTS. My fingers are beginning to twist on both my hands, more so on my left hand, and I've had surgery once on my right hand, 4th finger beside the pinky to release it as it was stuck in a bent position. I will be having more surgery on the rest of my fingers as well as they are all following suit of what the first one did.
Then the pain goes down into my wrists, both my wrists have some damage and crack everytime I move them, elbows, shoulders, hips, knees, ankles, toes...Everywhere...Some days it even hurts to walk. I am fatigued 24/7, its like I can never get enough sleep.

I also learned that I have an antibody that will cause blood clots in the fetus if I get pregnant, and that I would need to be very careful and if I plan to get pregnant to tell a doctor right away so I can be monitored? That scares me! I also have Endometreosis so I can't believe this, my chances of having a baby were already a little slim and now this gets added to it?

I NEVER feel good, I always feel sick, sore, unhappy, every single day and I don't know what to do anymore. I was supposed to get married for my boyfriend of 4 years (now my ex) but we fell apart, mostly because of him, he couldn't (or he didn't want to) understand or handle what was happening to me, so he hurt me very badly and I ended it. I have NO plans of dating anytime soon at all now, I've lost trust in men because of how I was treated, its ridiculous.

I was laid off from my job in February because I could no longer keep up with it or physically handle it. I used to work with 36 horses at a boarding stable, I LOVED my job, but my Rheumy said no more physical work, only mental work from now on, and everything ended. I have been jobless ever since, and am finding it really hard to find something else to do. I was on medical unemployment insurance and now I am on basic unemployment insurance and am going through a program to hopefully be re-trained through government assistance funding as I really have no skills as I was not planning on this HUGE life change to hit me out of no where.

I feel like I am stuck in a pit of despair. No one in my family is as sick as I am, nobody has a history of anything I have, I am the only one. I am so young, I find it extremely unfair...I worked so hard in the beginning of my life to get to where I wanted to be, my passion was horses, and I had it in the palm of my hand, was living it, then BOOM, lost my job, lost my husband, lost all my self esteem, my happiness, I feel like I have nothing, that I'm empty.

I guess I need a kick in the pants, but I can't help feeling this way...
I also have an EXTREME difficulty in swallowing, so when it comes to taking my pills it is a real battle, so I would greatly prefer a drug that is administered by needle, instead of pill form, if there even are any.

I have had issues with my kidneys, and now my heart is causing me a lot of problems. I am going for an echocardiogram as soon as I am called with the appointment date.

I am so stressed out I am even losing my hair is large bunches, it just falls out WITHOUT me pulling it. I am working on getting an appointment to start seeing a psychiatrist as well...

I'm sure I forgot a lot of things I wanted to say, but I guess this is long enough for now, thanks for reading...Feel free to tell me I need a reality check and to smarten up, it might help.

I was told to copy and paste this in here...
Thanks  Oh Hunni- I feel so sad just reading about what you are going through. That's a lot on a very young plate.

Thanks wanttobeRAfree,

I will take a look at the injection forum. I still need to go see my family doctor to get a new referral to another rheumy, and at the same time I will ask him about seeing a psychiatrist, because I feel lower than low, I spend a lot more of my time crying or looking at the floor than anything else. The stress I feel is unmeasurable...I am glad I found this forum.
Oops I think I misread what you said about the injections. People can't believe I prefer needles over pills but, I can hardly ever get myself to swallow a pill, it is an insane battle and it takes forever until I can get just one to go down. Even with swallowing food or drinking, I have trouble as well, so I know it can't be all mental. I've tried not thinking about it as I take the pill, singing to myself, different methods of pills taking, head down, head up, little bit of water, lots of water, juice, yogurt, hiding it in food, doesn't work.

I don't even know if I can even ASK for a specific drug to be on, I just know that I DON'T want pills anymore.
Hello Hunnie,

Man, what a rotten time you are having!  I am so sorry you have to deal with this!  Good news is there are good drugs for RA control out there - do lots of homework so you are familiar with them and can discuss them with your new RD... education is, I believe, key to making smart choices in dealing with this disease.  Educating myself has given me a measure of control (I like control!) and leaves me with fewer "surprises"! 

You can request drugs or a switch to a new drug - just do your homework.  I don't try and tell my RD what to do, that would be silly, just ask questions and ask about alternatives or why she prefers one over the other.

Hunnie, I am glad you found us, and welcome.

Waddie Hello Hunniebun!  I am so sorry that you feel so horrible and feel so down.  Try not to feel bad about not feeling good.  So many people have been in your shoes and understand what you are going through.  However, the people that will understand you the best are those that are going dealing with it themselves.  I know you said you liked your first doctor, but you might luck out and get a better grip on your diseases with a new doctor.  There are doctors out there that will be more aggressive in your treatment.  Some of it is trial and error and takes time.  Some doctors will give you prednisone to help until some of the other drugs kick in.  I don't know if that is an option for you.  Keep searching for a good doctor.  I wasn't sure about my doctor at first, but he did say right off the bat that he would give me something to help.  He didn't want me suffering.  As I have seen him many times now I feel like he is on my side and I can say I trust him and think he is trying hard to help me.  I would also try to find some little hobbie or something that you can      do each day If only for a little bit that brings some happiness to you.  I don't know your ex, but I absolutely believe something better will come your way in time.  Also, don't forget how strong you are.  You don't need anyone else.  But don't rule out wonderful people coming into your life either.  Keep us posted and keep trying to find a doctor.  I am sure you didn't know what your favorite soda/drink was until you tried a few, right??!!  We are here for you.  Feel better soon. Oh I definitely don't and will not tell my doctor what to do, I just really, really, REALLY don't want anymore pills, I'll take injections in my stomach or anywhere else over pills. I've had so many needles already that I just fall asleep every time I go in for blood tests or go to the hospital, it just doesn't phase me at all anymore.
I am glad I found this place, nobody at home knows how to talk to me since none of them experience this and I was told that all I was doing was bringing everyone down.
I really hope I get accepted for government funding for work training too, I don't see why I would not qualify, but if I don't, I can't help but think I'll sink even deeper into my depression and not come out.

ARGH...Life sucks, lol...
You have your hands full.  I am especially sorry about your job.  I rode regularly and showed in college before the Ra started causing too many problems my sophmore year.  I really miss the horses, but I travel to shows with friends that still compete. HI there, just wanted to add my support for you. You really do have a lot on your plate.  I dont have RA but psoriatic arthritis but i can identify with some of your frustration, i was diagnosed at 24 (now 27) so i know how frustrating it is to have life all ahead of you and then this comes along from nowhere and  your thinking..why me?  my hands and wrists are most affected and i know how frustrating it can be to do the most simple things and your in pain and weak, you dont often realise how much you depend on your hands, when simply opening the car door is an effort!! sounds like you def need to get ur meds reviewed!! I can't go home from the office without offering my support to you. You have more than your share to deal with and need all our support and understanding. I haven't been on the forum long but the thing I like is that I know when I really have a bad spell these folks will understand and be there. Please don't let your depression take over. With the right meds, your life can improve dramatically. It just takes a while for the docs to get the right combination that works for you. Just keep the thought in your mind that it will get better and you have lots of friends here who totally understand.Hi! As SnowOwl said, I am glad to see you here. You are most welcome here and I am sure you will find the support you need.

Cheers and best wishes, Shug
Hi
I am a fellow horse lover! In a previous life I was an equine massage therapist and an eventer. Later, after I fractured my neck in a jumping accident, I switched to dressage only. Now my knees are so shot that I really have no hope of riding again. I know how sad that makes you feel.

I'll just add to what everyone has already said. Hang in there because things will improve. Once you get the right meds you should begin to feel some relief. Discuss your pill issues with your RD. There may be something he/she can do for you.

Also, you might want to talk to your doctor about your depression. You have very valid reasons to feel depressed, heaven knows. Maybe you would consider taking an antidepressant? I started zoloft a few years ago and it has really made a huge difference for me.

Please keep us posted on your progress. We understand how you feelYeah, I broke my hip 2 years ago in a jumping accident and I haven't been able to sit in the saddle properly since, let alone follow the movement of the canter very well anymore. I have chronic pain in that area day in and day out. Even with walking I can feel that area grind or pop and sometimes every step is agony.

I will be seeing a psychiatrist in a little while, just waiting on an appointment. My doctor discussed anti depressants with me yesterday because I just feel lower than low can go and I can't snap out of it. My only problem with that...Is not being able to swallow properly. I am going in today for more blood tests. I swear I am so used to needles now I can go to sleep when they do it.

Thanks everybody for replying to me, its made me feel a little better and now I don't feel so alone.
Hi Tanya, fellow BC'er

I am curious to know if you have ruled out Lyme as a cause to your problems?

Lyme borreliosis is a multi-system infection that can cause any symptom and any disease.

It has been my experience that Lyme has a penchant for injury such as your hip.

Most BC Lyme patients are forced to get US testing and treatment.

If you click on my osteo. page in my sig. and then look for Lyme Symptoms on the left you can see if your symptoms might fit this disease.

Good Luck!

Ron
My doctors never even mentioned Lyme once, but I will take a look thank you.   I'm glad you talked to your doctor and will get referred but meanwhile you might call him back and ask for a course of prednisone to tide you over.  If that helps it will be a sure indication of RA.  Then as for the pill swallowing...here's a hint that is often used in nursing homes and hospitals.  Put a pill in the middle of a tablespoon full of applesauce and it wilol go down easily.  I've often seen folks take pills with jello too, but the applesauce seems to work fine. Honestly, I have tried every trick in the book, and none of them work. I get made fun of because of this problem, it really makes me feel like a baby I guess, but I can't do it. Even candy and things that taste good I cannot swallow whole. I can't swallow much at all, I can't swallow big gulps of liquid, I have to do slow small amounts of else my throat closes up, same thing with food it has to be chewed really well or it won't go down and I have to concentrate. My throat is always sore and I am always clearing my throat as well so I'm wondering if its a medical problem as well as mental, maybe it goes along with the sjogrens since my mouth is always dry? I don't know...I just can't swallow anything and I have been trying for about 12 years now.
I heard I am not the only one who has this problem, but once again no one in my family does but me so it makes me feel pretty silly that I cannot get over it.
Dear Tanya, I'm so sorry that you're having such a hard time right now. I haven't read through the replies you've already received, so I apologize if I'm repeating things that have already been said. I'm in a very similar place as you right now. I'm tired 24/7, depressed, frustrated and sick of feeling sick all of the time. You've taken a great step in joining this board and writing about what's going on with you. You've clearly got some fight still left in you - which is exactly what you need right now. I believe you're at a turning point in your life right now. The analagy I recently heard seems to apply to you. Think of a plant that is growing poorly where it is planted. It's a beautiful plant, it's just not thriving as it could be. So, the gardener uproots the plant (roots and all) and re-locates it to more fertile soil on the other side of the garden. The plant is still the same beautiful plant, it just needed different soil and locale to thrive. You are that plant and you are currently being uprooted. It doesn't feel good to be uprooted, does it? An uprooted plant may feel sick, lonely, undernourished. However, you're being re-planted my dear! Your roots are (at this very moment) being placed (ever so gently) into beautiful, dark, rich, fertile soil. It may take a spell for you to feel the effects of your roots securing themselves where you've been planted, but you will! What might help you - is to get yourself a nice 3-ring-binder. Decorate the front - something to make you happy (a sunflower growing tall in the sunlight perhaps?) In your binder, make some sections. This will be your "growth journal". You can have a section for RA info (print out info on RA meds and put them in your binder). Read through them (with a highlighter) when you feel up to it. Another section can be a journal (if you're like me and prefer typing, rather than writing, type out journal entries - or even daily logs of how you are feeling - and print them out). Another section can be on self-care skills - for me - changing my eating has been one thing I know I can improve on - and I have researched foods that are supposed to help with inflammation. Another thing I put in mine is EXERCISE. I have very small exercise goals right now and log everything. Today, my goal was to walk to the mailbox! I'm hoping to be able to increase my exercise goals each day. Another section in my binder is - Alternative/Holistic practices. I get massages when my finances permit. I have also had acupuncture and am looking into hypnotism to help with pain issues. This may be something you can do to help you feel in control - and may also help you to focus your energies on things that will make you feel better. I know this is a hard thing to live with. I have felt hopeless and despondent more than I'd care to admit lately. I'm praying for better days and that is my prayer for you as well. Let us know how you are doing. Keep posting, keep writing and hold onto hope. I've met countless people who have been in dire straights with their RA, etc. and are now doing extremely well! So, know that there is hope and you're not alone. Love and gentle, healing hugs, juliahso sorry to hear of all your troubles, Tanya...  It often happens that way to any of us.. raining and pouring down on us. 

Hi Tanya!

I am 44 and was diagnosed with RA and Celiac disease in 04/09. Now my RD thinks I actually have rhupus even though my Lupus titers are negative. I know exactly how you feel because I feel the same way and nobody really does understand this condition unless they have it. No one in my family has this either although it is hereditary and sometimes skips a generation. For years I was tested for Lyme once or twice per year as I have been fatigued with achy joints and feeling depressed since I was a teenager. I really don't have swelling in my joints but most days my feet crack every time I walk and I have days where my knees feel like they were hit by a board. My fingers and toes hurt 24/7 and I type for a living so my fingers always take a beating. I broke my wrist 2 years ago in a horse accident. I had the same wrist broke when I was 12. Now I have a plate and screws in it. Out of all my joints I must say it feels the best! Weird, huh?