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Hi. I'm new and a bit nervous.

I was referred to a Rheumatologist by my PCP. After much testing, I'm told I have Secondary Reynaud's, Secondary Fibro, Secondary Sjorgen's and "pre-lupus". My doc says that my history and blood-work indicate Lupus (SLE), but my symptoms are not yet 'severe enough' to mark "lupus" on my permanent medical record. He's worried about me loosing my insurance if he gives the diagnosis. He says there is a lot I can do (diet, exercise, healthy stuff) to mitigate my immune response..........maybe even stave off this disease. I do not yet have any organ involvement.....but I do have most of the symptoms of SLE.

I've been given Ultram for the pain. I have also been prescribed Hydroxychloroquine, but I have not yet begun taking the anti-malarial. I'm a little afraid of it, if that makes sense to anyone.

I guess I'm just a little scared in general. For many, many years I've been told by everyone that all of my symptom's are 'all in my head'. I started to believe it, actually. Now I'm told that it's not all in my head, my own body is attacking itself. My husband is trying to be supportive, but he still doesn't really understand what I'm going through. When I told my brother, he thought it was an excuse to get pain meds (he thinks I'm a drug addict rather than I have medical need for meds)........it's not an excuse. I haven't even been prescribed narcotics for this, and I don't want them.

I just want to be normal again, whatever that is. I just want life without pain, where I can go into the sun without consequences, where I have the energy to clean my house. I want to not have to think about these things. I want my body to be the same from one day to the next-- but it's not. I guess I have to get used to this.

Any help or advise would be greatly appreciated. Thanks for listening!
 

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Hi

Is you doc a lupus specialist?

Diet exercise healthy stuff. Doesnt work 4 me:eek: how can you exercise when you r so tired or can barely move?

Diet I couldnt have been healthier bit of a health freak.:eek: Still got sle.

Stuff doesnt work I was trying to boost my immune system :eek:and thats bad apparently.

Sorry for the rant:sad:

Hope you get some answers soon

dixy
 

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Discussion Starter #3
Thanks for the response, dixy.

Yes, I believe my doc (the Rheumie) is a Lupus Specialist.

I agree about the diet and exercise. I'm a healthy eater anyway, have been for decades. I do exercise when I can.....but it seems every time I do, I'm worn out for days afterwards. I'm trying to be a good patient and do what he says....but I just can't exercise every day. My job is very physically demanding, just having the strength to go to work is a chore at the moment.

I'm trying. I'm really doing the best that I can, but it just doesn't seem like my 'best' is good enough.
 

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Hello and welcome :)

"Pre-lupus" is a bit of a strange term used by some docs but your rheumy is right that the lupus label can have insurance consequences which can be good to avoid. The main thing here is that he has taken you seriously and has prescribed plaquenil.

Plaquenil is the first line of defense against this disease and is an extremely safe med. It takes a while to work to full effect (usually between 3-6 months, sometimes longer) but is well worth it for the benefits it brings. It has few or no side-effects unless you are one of the unlucky few that is intolerant. Its main strength is as a disease modifier, acting on the disease and reducing frequency and severity of flares.

Many of us have gone through similar problems to yourself being told that it is in our heads, down to stress/overwork... suddenly getting diagnosis can then be a little daunting to say the least and no-one here would say it is easy. Emotions do tend to go up and down and I think that all of us, even years afterwards, sometimes wonder if it isn't in our heads afterall (maybe wishful thinking that last).

Be careful of what reading you do on the internet. There is a lot of old or incorrect info out there and some of it can be downright frightening. Also, don't take the members of this board as "typical" of the lupus population. Most people who come here are newly diagnosed, not yet diagnosed or the rarer more severely affected. Many people who have lupus do go back to normal or near normal life once their medication kicks in properly and their meds are tailored to their needs (that can be as individual as the disease).

I'm afraid that sun avoidance may just be a thing that becomes part of life. The sun can be very dangerous for us - not just visibly, on the skin, but internally as it can cause hidden inflammation and lead to flares of the disease. It's something that can be inconvenient but some simple little things can make life a lot easier.

Don't hesitate to ask questions. We have all felt lost and understand what you're going through and there are plenty of caring, knowledgeable people here who are very willing to help in any way they can.

hugs :hug:
Katharine
 

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Just one more thing - Yes, exercise is important when you get to the stage that you actually can do it but by "exercise" we mean gentle, adapted activity, not running marathons.

This disease is not one that you should "push through" - doing that makes it worse. You need to learn to listen to your body and rest as much as you can when your body tells you to. Learning to rest whenever you can (even ten minute cat naps can help) and pace yourself is a very important part of learning to live with the disease.
 

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Hiya, I was diagnosed with MCTD in Nov 08... taking a while to get used to as I was pretty into health too!! I know the wanting to be 'normal' and think you are on the right path to starting to feel a bit better and having some more good days than you are at the moment. The hydroxychloroquine..or plaquenil is a slow acting drug and can take up to a year to have an effect so it is advisable to start that asap once you have had your vision checked. I started in Dec and it is slowly kicking in now...it has a pretty good safety record and is one of the 'staple' drugs to treat Lupus or lupus type illness. The side effects are smaller and rarer than alot of the other drugs used. It is a good idea to take them with or after food and not within 4 hrs of any antacids you may take...400mgs is the usual dose, though can start you off on 200mgs. Some people manage just on this drug, though not me at the moment!!:).. don't worry about what others say, you areliving inside your own body, they are not... just trust in yourself and listen to what your body is telling you and don't be afraid to get help and advice from your Drs or this board when you need to...there is alot of helpful info on this site from people who have been there and done that!! All the best, get started on those meds and you will be closer to that better day..
Claire X
 

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Hi Simetras.

At your next appointment could you take your husband with you? That way he will learn right along with you. It is always nice to have another person with you. That way they will remember what you don't remember. They can always add to the conversation if you forget something.

I wouldn't even give the time of day to your brother's comment.;)

Learn to listen to your body. Living with lupus is doable we just do it in a different way. I think we appreciate life more than the average person.
Take care,
Lyn
 

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Discussion Starter #8
Thank you each and every one for all of your helpful and kind responses. It really makes me feel a bit less nervous about all this, and I appreciate that very much.

I am learning to listen to my body and what it needs.....I'm actually beginning to get good at it. My problem is more that I can't get my family to understand that pushing through the pain causes severe consequences for me. They think (not so much my H, but my Dad and brother) that I am lazy and pushing through will make it all better--- NOT! I am learning to stand up for myself with them, but it's difficult having your family think less of you for something beyond my control. I suppose they need time to get used to all of this too.

I like the idea of taking my husband with me to my next appointment. I had already thought of that, but part of me doesn't want to scare him away. I know he needs to understand and be part of all this......sometimes I just feel like such a burden.

I'm feeling better about taking the anti-malarial drug now. Hearing that many do not have side effects makes me feel better about it. Also, knowing that the sooner I begin, the more chance it has to work (I realize it can take months). So, I'm taking my first dose right now (I just ate). I'm keeping my finger's crossed!

Again, thank you all for the replies. I'm sure I will be frequenting this board and really appreciate all the support. I'm glad to have found this site!
 

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Hiya again... perhaps you could give your dad and brother a book on lupus for their birthdays...:lol: There is also some advice on this site on how to explain to others how you are feeling, might be worth giving them some reading material!!! Or what about taking your dad to the consultation, that may quieten him down!! Or perhaps a later one would be better, especially if your Rheumy is a good educator ;) My husband comes with me to our appointments... I call them our because it affects our life together, and we are a team.. think he would understand less and feel less included if he didn't attend. I am fairly positive most of the time and so is he..but he loves to get a good old nagging in every now and again; usually when my body has 'slamdunked' me good and proper!! Glad you have started on the plaq, hopefully that will have good effect, though may be some time... take care
Claire X
 

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Welcome to the forum.

I actually found it very helpful to take my husband to the first few appointments. The rheumy made it very clear to my husband how important it was to have his support. He also explained the unpredictability and seriousness of the disease. Most importantly he stressed how important rest and stress reduction were.

My husband in return let the doctor know how bad things actually were. I tend to be what doctor's call a Pollyanna. I am overly optimistic and never think things are as bad as they are, hence was leaving out symptoms I felt were too minor to mention.

After the first couple of appointments my husband felt more at ease. He trusted the doctor and felt I was getting the best care possible. Prior to those appointments he had felt helpless and frustrated with all that had been going on.

Take care,
Lazylegs
 

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I have to say I found it interesting that you were diagnosed with all those "secondary" things when there was no primary thing! I wonder if the doctor is technically giving you an UCTD (Undifferentiated Connective Tissue Disease) diagnosis to spare you the severe consequences in the USA of a SLE or lupus diagnosis. It sounds as if you are getting the best first line treatment of Plaquenil, but please remember it takes 3-6 months to start working for most people. For me it took 9 months!

I'm sorry to hear your brother and Dad just don't understand... my suggestion would be to just not listen them just as they are not listening to you. You can't afford to fight them right now... you need to focus on yourself and resting when able instead of using up even precious mental and emotional energy on non-understanding people.

It takes some people some time to process it all. Oh, and in a way, Ultram is a type of narcotic pain medication. It just doesn't have quite the same risk of addiction as the other more traditional narcotic pain meds, which is good.
 

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Hi,

I just wanted to say that the links Katherine has posted have proved very beneficial in my case.

My normally very sensitive husband had been saying (unknowingly)very insensitive things. I was too upset to get anything across about my severe limitations.

Knowing he goes on the computer soon after coming home, I left those links open for him him to read. He did read them and they got through to him that when I say I can't do something, it means I truly am unable at that time.

If anyone truly cares they will want to be informed. I also e-mailed a friend the spoon theory, and she has proved to be very supportive.
I hope you get the support you need at home, and I know you are well supported here. I feel I am, even if I am just reading replies to others who post.

Tammie
 

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Stress is a big thing for us with lupus. Stress equals pain. Our body reacts with increasing pain levels. I know it is hard to avoid all stress. Even good stress gets me too.

Love,
Lyn
 

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Hi and welcome to the site. It is not all in your head but can be made to think that way so that you fit into the outside world. You are not alone and we have all been were you are right now. You are sick and will have bad days and good ones. It should not matter what your brother thinks, you will have to understand at some point that you are sick, and if he don't it is his loose.

It will take time for you to learn how to limit yourself so that you can save energy for what you want to do or has to be done. I do hope that you are seeing a specialist as that will be of most help to you. I hope the Ultram is working for you (it is a pain pill and should work, it may come to a point when you will have to change meds). Don't deny treatment that will help you, use what you have to so you can feel better.

Chronic illnesses are very scary things. You have a lot of bad times and limited good ones. There will come a time when things will become normal for you and it will not be so scary and you will find your normal again. We all had to adjust our normal to a new normal that we could live with. We are here for support and for information if you need it. We love to just chat also, everyone needs a release and we are here for that also. I hope that you are feeling well and doing well.
 

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Hi, all in all I think it sounds as though you are in good hands. I agree that diet and exercise can do us good but we have to know when to push and when to stop. I have an excellent diet but when I overdo carbs I flare and get fatigue much worse than when I stick to my low GI diet. I guess the body gets stressed when we eat the wrong things and produces all kinds of hormones to correct a sugar surge or deal with caffiene overload etc. For us being so delicate it can be a nightamare.

I got myself over my initial crisis with graded exercise and pacing. I went from around 10mins energy a day to working 12 hrs, albeit constantly flaring. It can be done. I was told it was all in my head for over ten yrs and given no treatment. I was bedridden and unable to walk or make memories for eighteen months. i couldn't walk for three yrs.

It's scarey taking the plaq but believe me you won't regret it. Just don't do too much all at once when it kicks in and you feel bettter, am still paying the piper for that

:hug:
 

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Thank you all for the wonderful advice and welcome! I'm sorry I haven't responded sooner-- my internet connection is wonky lately (they are trying to fix it).

I finally had a really good talk with both my H and my father (separately). My Dad just didn't understand that the diagnosis had been confirmed-- he's suspicious of doctors in general. When it finally hit him-- he was devastated to hear it. I feel so awful having him hurt because of something happening to me.....but I know I needed to be honest with him about all of this. I have taken the suggestion to get him some reading material on the topic as well as directed him to some websites (including this one). Katherine-- thanks for the links! The spoon story really helps explain things!

My H is also taking this in better. I think it's just a shock to all of us. He and I are determined to fight this together.

I'm still not talking to my brother about this....but I'm sure some day I will be able to.

Maia-- Yes, I thought it was odd too that I have all these 'secondary' diagnoses, but no primary. I spoke to my Rheumie about it and he said for now, UCTD is the primary although he thinks it's lupus. He doesn't want to condemn me with an official diagnosis for insurance reasons, but is treating me for lupus. He says that since we've only had two visits....he doesn't want to jump into anything. He's calling it 'pre-lupus' to me. I like that he is cautious and that he is taking me seriously. I really like my Rheumie!

Oh, and the Ultram/tramadol is NOT a narcotic. It is a centrally acting synthetic opioid analgesic. It does have similar properties of narcotics, but is not quite as addictive and is not a controlled substance. Just fyi.

I can't answer each one of you specifically (not enough room!), but I want you all to know how much I really do appreciate the responses. I am learning to manage my stress (the enemy!) and learning to limit myself-- to really listen to my body. I am a Master Massage Therapist, so some of that comes along naturally for me-- I've been doing it for a long time.

Thanks again everyone! I'm sure I will be posting more as I try to come to grips with this diagnosis and learn how to effectively manage the disease.

One question......I've only been taking the Paquenil for less than a week, but already my hair seems to be falling out less. Is this possible? I know it takes a long time to kick in...but could I be receiving some benefits already? The pain is still where it was before, and the exhaustion, but the hair loss is better. Just curious. No side effects from the med so far either-- YAY!!
 

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Hi and welcome :)

It's probably too early to expect the Plaquenil to be having an effect on your hairloss, it's a pretty slow acting medication. However it is possible that you have been relieved of some stress just knowing what you have has a name and is treatable if that makes sense. Either that or you were in a flare and the disease activity has calmed down a bit. Both would result in less hair loss :)

love
Lily
 

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Thanks Lily. That makes sense. I hope it's the latter-- that my on-going flare is subsiding! But really, I'll take either.

Knowing that calming my stress can help may make me more prone to take action in that department. I do feel a bit of relief (weird I know, but it's validating) having a name for all my health woes. It does calm me, strangely. It's like I can fight what I know (mentally) but the not knowing kills me!

My H and I are closing a deal on buying our first home while all this is going on-- plenty of stress with just that! :bigsmile:
 
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