[Tink21]

I know i must sound crazy...I might be crazy. I keep questioning if it is really Lupus. My doctor just officially diagnosed me. But with all of the other problems he has diagnosed me with I am confused. it seems so hard to differentiate what is causing what and i dont want to be on the wrong meds or too many and right now I just want relief from the pain.:worried: I have a weak positive Ana all other blood work is negative. These are the symptoms I have

Widespread Joint Pain (Hands, Fingers, Shoulders, Horrible in Hips, Knees, and Toes)
Chest pains
Fatigue-
Dime to Nickel sized scaly rashes
Hair Loss
Mouth Ulcers
Cold Hands and Feet
Nausea
Swollen glands
Migraines (frequent)
Vertigo
Nerve Pain in Feet
Multiple Chemical Sensitivities

I have been on plaquenil since December and have yet too notice a difference. I have been on 15mg of prednisone for 3 weeks. Since starting the Pred I have not had any chest pains, headaches, or ulcers. Up until 4 days ago I was feeling great minimal joint pain lots of energy. Then Friday it all just went back to the way it was and I dont understand. The doctor has diagnosed me with Lupus, CFS, Peripheral Neuropathy, Osteoarthritis in my ankles and Reactive airway disease. He belives the chest pains are due to pleurisy or costochondritis. I have been previously diagnosed with Fibro, Multiple Chemical Sensitivity, TMJ, and Scoliosis. there is so much overlap in so many of these things. How can they be sure it is lupus? I only ask because I am in horrible pain ALOT. Most days just walking around my house takes all of my effort. My hands hurt so badly that I cant open anything and have had to limit typing to when I have not done alot with them. Anything I want to do requires hours of rest before and after. I thought the pred was working, but now I dont know what to think. i am scared to question my Rheumey because it took me 5 years to get someone to listen to me and believe me. Please help me, I am so scared and confused. i have 2 small children, I just want to be able to enjoy them. Thanks you for taking the time to read this, I know it's alot. i just dont know where else to turn.

 

[x_claire_x]

Hello, just wanted to send you my thoughts, sounds like you are having a tough and confusing time. It can take nine months for the plaq to have effect so don't get disheartened.. it may take you a bit longer to see any benefit. I started Dec too and only just starting to feel a bit brighter. It is strange that on Friday things seemed so much worse again, I wonder if you have been overdoing it whilst feeling a little more human? That is a typical 'lupie' thing... go a bit over the top when feeling a little better and then getting a big pay back over the next few days or so.. do go back to your Rheumy, keep a diary of symptoms and any photographic evidence to help illustrate your symptoms and score your pain out of ten for each part that is regularly hurting.... it helps clarify what you are trying to communicate to them. They will assume you are doing ok unless you let them know otherwise so it does help them treat you correctly too.
I am sorry I can't be of more help, sure the others will give you some good advice, take care of yourself and continue to seek more help.
Claire X

 

[weneego]

breathe...

dear tink-
well you've turned to the right place! one of the right places.
i don't know what your diagnosis is but i do know what was like to "finally" get someone, a doctor to take me seriously and how scared (terrified for my life) and in pain and sad i felt when i was diagnosed with several autoimmune diseases. i can only imagine with young children you may have even experienced desperation at times yourself??

my experience has taught me that a good rheumy understands that their patients need to develop good working relationships with them, need information and patience from them (especially when first diagnosed with lupus like you) it's okay to ask questions, they expect it. if yours doesn't after several attempts, find someone who will support you. i had to b/c i didn't have the energy to waste on doctors that were judgmental and not helpful.

realize that your doctor may not be able to answer all of your questions immediately, since sometimes diagnoses change with more time and information and sometimes, they are added onto. doctors are making educated hypotheses based on the data, but it's not always right and the data is extremely hard to collect in the case of lupus.

i know how difficult it is to wait. but my advice is to try to focus more on taking care of yourself in the next minute, every minute all throughout the day and on building your support network, more than focusing on sorting out the diagnoses. your doctors will help you and will most likely need more time.

it's not always possible to sort out what causes what, what comes first, what the was that?? it's not always important either..unless you are logging symptoms or it's an emergency. in the bigger picture your body is going a little haywire right now, and i believe it needs you to help, as much as possible, to soothe it.

since pain happens to gain our attention, that something is wrong. so when i was desperately searching, hoping, waiting (for a diagnosis or for plaquenil to kick in), undergoing tests after test, i still wasn't focusing on what my body needed from me. just like i needed to be acknowledged by my doctor that something was wrong with my body, my body needed to be acknowledged by me for it's pain. it needed me to become my own best pain manager. and of course we still need our doctors for medical help with pain management but i had to take responsibility for the unnecessary stress i was putting my body under.

i had to figure out how to get relief even if for a moment..did you know that while under extreme pain we can still laugh?? renting comedies proved to be a great distraction for me. warmth? being in water? affection? some quiet? meditation? being in nature? laughing at your children? petting pets, music, allowing yourself to allow others to care for you, to do an errand for you, to watch your kids (guilt free) while you sleep, looking at old photo albums with happy memories, joining a support group for chronic pain, swimming, etc. everyone has their own list. when i had severe pain, my list was very simple and grew ever so gradually. my list started out with taking some deep breaths!

nothing peaceful came from my panic, desperation while i was in severe pain. and i didn't think there was anything URGENT about learning about chronic illness, unless of course i needed to be hospitalized or otherwise cared for.

i'm sorry if i'm assuming that you are feeling desperate. i guess that's what i related to the most when i read your story.

by the way, you are not crazy. you may or may not have lupus. but you are a strong woman. you have 2 small children. you have this website. and all you have to do is pull in your support now so you can rest and take care of yourself. we cannot do this alone. maybe we can but i don't believe we can get well or have a high quality of life if we try to do this alone. you have been through a lot. you have a lot of symptoms and a lot of pain.

do things that make you feel good about yourself, your children and your life, every day however small and just do what is the next right thing to do is, what is right in front of your face?..and try try try not to worry about the rest, at least not all at once. just breathe.
sending you peace and comfort,
wendy

 

[Katharine]

Hello Tink and welcome

I don't think you're mad at all. We have all questioned our diagnosis at one time or another, especially those of us that had problems getting diagnosed and had other diagnoses beforehand.

The disease itself (you certainly have plenty of quite typical lupus symptoms) is very complex, even more so when there are overlaps (as there are for many of us) with other diseases.

Communication with your rheumy is very important. Don't hesitate to "complain" when things are very bad. Sometimes pain is a very vague notion to a doc. You need to get across what things you "can't" do because of pain etc. Giving concrete examples is one way of doing that. Plaquenil does take a long time to reach full effect (often between 3-6 months, for me it was a lot longer) and it is good that your rheumy has given you some pred too to help you through. He may need to reevaluate meds at some stage and see if plaquenil alone will be enough in terms of disease modifying meds. Many of us take a little "cocktail" of meds. That may sound awful but in fact it is all about balance and taking enough meds for effectiveness while limiting side effects of taking more of others. It may not seem so to you but you are quite early on in your treatment regime.

It is indeed very difficult to know what disease exactly is causing what and that can be both confusing and extremely frustrating. With time you will probably find yourself being able to distinguish between things but that takes a while. It is normal that for the moment you are "hurting" and all the more frustrated because after waiting so long for answers we are naturally impatient to see meds work and feel better.

I don't think I can add much more right now as you have already got very good advice from the others.

hugs to you :hug:
Katharine

 

[nicky00]

Hi Tink

Welcome to this great forum....honestly it is good espicially if you stick at it and keep asking those questions and gather knowledge gradually over time.

It is scary to begin with and comes with a huge overwhelming lot of unknowns. I speak for myself and a lot of people Ive seen post on here.

Thats normal in the circumstances, a lot of us have gone through that.

Plaquenil took 10months before I finally felt the most benefit.
I was on nothing else not even steroids.

Eventually when I was told by a Rhumatologist that all medicatioins can do is to 'supress the disease and not cure it. ...that helped me get to grips with why on some days I felt worse than others on medication.

Its really hard to try and emotionally cope let alone physically with trying to find the best treatment for yourself and also fight your corner with doctors medically if you have to when your feeling in such pain and sooooooo tired.

That is the horrible bit.

You may eventually need more medications , less or to try somehting else.
You need to ask your Rhumatologist everything you can think of.

Take somebody with you, it does help.

Write it all down.

Make a diary or notes , notoriously we forget so much.

There will be people Im sure on this forum who will try and help you more with your questions.


Take care
Nicky

 

[debatat]

Hi Tink

Sorry that you are having such a rough time. I understand how you feel, doctors change their minds so often when they do give you a firm diagnosis it can be hard to take in. It must be especially hard with two little ones to look after. The others have given you great advice. Keep posting, let us know how you get on and join us in chat some time.

Take care

Deb

 

[Maia]

Lupus is usually not a diagnosis given lightly, and I think it is very normal to question the diagnosis at some point even if the evidence is overwhelming. It is very hard for us to say definitively "yes you have lupus!". I can understand your questioning it with the plaquenil not helping yet (but it took me 9 months for it to help) and now the prednisone apparently not helping anymore either.

Have the rashes been biopsied? That is one way that could really definitively "prove" if they are due to lupus or something else.

The blood work is not too supportive, but some people with lupus are negative on most bloodwork if not all bloodwork. Bloodwork alone cannot eliminate lupus as a possibility, especially when you have a lot of symptoms of lupus.

Are you comfortable that other possibilities have been ruled out (like tick borne illness)? If so, then it's good your doctor is thinking about lupus and treating you with a very safe medication (Plaquenil) and giving it a try. For pain relief, you will really need to stress how it is affecting you and what it prevents you from being able to do. Have you tried any NSAID medication yet?

Good luck to you... I hope you can get some relief soon.

 

[Tink21]

I greatly appreciate everyone taking the time to answer me. I know everyone here is in the same boat and it means alot to me.

The rashes have not been biopsied. I have not had another rash since starting the pred, but will definitely remember that for the future.

My doctor has ran every kind of blood work under the sun. They have also x-rayed most of my body parts, I have had a pelvic mri and an mri of my shoulders. Before they figured out that the pain WAS coming from my hips they did exploratory laproscopy, ultrasounds and a cervical biopsy to rule out anything gynecological. Every test that has been run has back back normal. I have minor joint space narrowing in my shoulders, a little bursitis but thats all. Until the Positive ANA came around. I do feel like they have ruled anything and everything else out. I feel like the diagnosis is right, mostly I just question if that is were all this pain is coming from.

I have tried soma, flexeril, vicodin, darvast, neurotin, ultracet and 4 different anti inflammatorys. All of the anti inflammatorys made me very sick to my stomach as did the flexeril and ultracet. The somas and darvaset did not work and the vicodin made me feel too loopy. I am still taking the neurotin it seems to really help the nerve pain in my feet. The biggest problem with pain medication is I don't feel comfortable taking anything strong during the day because I have my son to care for and i dont want to take any chances. He is CRAZY:hehe:!!! The problem is the worst pain is in my hips so every step is excruciating. It makes standing up for long periods of time next to impossible. Does anyone know of ay pain meds that are effective but dont make you loopy?

weneego- Thanks for the ideas of ways not to focus on the pain. Sometimes a bath helps. Naps are a definite must! I am a little desperate. I just want to feel better. I am so scared that I am going to just watch my live go by. The last 5 years have been ****. It is a relief to be finally getting treatment and I guess I just need to be a little more patient.

The main reason I was trying to sort out what might be causing what, is just to make sure I was treating the right problems. I get what everyone is saying though. Again thanks to all of you. I tried posting on a different site when I was is diagnosis limbo and couldn't get much response. It is a great feeling to find a group of people that understand and care enough to try to help.

 

[keebler]

Hi Tink,

Welcome to the forum. It is a great place with good information and caring members.

When I was first diagnosed, I questioned it. Part of me was hoping that it wasn't lupus. I was all to familiar to lupus as my brother has sle. I think we all go threw that.

I have heart failure and I also wonder which one is causing this pain. It is hard to tell what is what.

There are several antiflamtories out there. Sometimes it takes trying several to get the right one. I know that stomach trouble when they don't agree with us.

Have you tried going to a pain specialist? I fully understand about not wanting to be to loopy to take care of a child. I hope you and your rhumey get something figured out.

Love,
Lyn

 

[onetay]

Tink,
It can be very confusing what causes what and why you have been told you have all this wrong with you. Hon, I started with migraines, than sleep apnea, then lupus, than ra, then bone spurs, then tennis elbow, and just waiting for more to happen. Someone once said lupus likes a party and it don't like to party alone. I know that is not funny but it does seem that anyone with lupus, does not just have lupus.
As for to much medicine it can happen but if you ask the right questions and make sure all your doctor and pharmacies know what you are taking both prescribed and over the counter than that will help to make sure you do not take overlapping meds. I carry a card in my wallet that has all my conditions on one side and the meds and doses I take on the other side. I make a new one everytime my meds change or I get a new problem added to the old ones. Read some of the posts and join the chat room and talk with the people here and be educated on meds and conditions.
I do hope that you start to feel better soon. I am willing to help in anyway that I can so if you have questions just ask and we will see what we can do to get answers for you.

 

[Pink Pearl]

Hi Tink,
Welcome to the world of lupus. The one thing I think is very important to remember is that there is life - in, with, and through lupus. Medical students are often told that "to know lupus is to know medicine." Very rarely are any two cases the same. This is why the diagnosis of lupus is made on meeting 4 of 11 criteria - with OR without lab work.

I happen to be one of few who has always been negative to ana's, but have been positive to other antibiodies. My cousin's symptoms mirrored mine except that where it hit my lungs, it hit her heart. She died at 36 of her 10th heart attack. She was also ana negative, but positive on the same other antibodies as was I. Fortunately, my rheumy was able to take her on as well, and was intrigued that we were so similar.

The rheumy I have been with for 16 years, is the 4th one I have gone to. The first 3 were not a good match for me and so I left them. The relationship with our doctors is, in my opinion, crucial to have a partnership. We need them to keep us alive, and to help us, at times, deal with some crucial health issues. Our doctors must also work as a team with us, and each other, for to have each one on their own little orbits could be deadly. If you aren't comfortable with your doctor, then you need to find one with whom you are able to work. At times, in the past, I was so ill that I was having a hard time dealing with day to day things. Had my doctors NOT communicated with each other, I would have had a much harder time to recover. Literally, they would touch bases weekly, or more, just to make sure that they were all on the same page. My doctors are not in a group practice, nor are they at the same hospitals. Yet, it has worked well as we are all on the same idea that we will get through the tough times.

We all have our horror stories, yet, we have survived them. Lupus is a challenge, but in the scheme of things, we have it much better than our predecessors did. We have a normal life span expectation, while difficult, our health complications are surmountable. Far better than the 5 year survival of 30% back in the 1950's.

This board has excellent moderators and life experience from many here.

You may find that keeping a journal will help you to identify those things which you need to discuss with your doctors. Enjoy your little one. They pick up on so much of our health issues, and are far more acommodating than we sometimes give them credit. Just because you have lupus, does not mean that lupus has you.
Sally

 

[elisabethm]

HI Tink have they said that you have bursitis in your hips as you can get an injections.I have bursitis and i get injections every couple of months.As you have small children then the injection is better than having to take strong meds.You will get great support on the site as we all do.Best Wishes Elisabeth