newbie and panic stricken

[FluppyPuffy]

Hi everyone,

so here we are, after many years of suffering painful joints and hurting from the slightest of touches, suffering chronic depression, terrible fatique and a rubbish sleep pattern, I finally got to see a rheumatologist to see if this combined with the skin complaints, irratable bowel etc etc (too many other things to list)was Lupus SLE. After examing me she declared, I dont think its Lupus but we'll do more blood tests. I do however think its Fibromyalgia, I'll refer you to the Fibro clinic and heres a leaflet to take away.

So I'm at the "so this it it" stage. The leaflet says theres no cure, you can hope painkillers help but avoid opiates. I'm confused, my other half is so caring and wonderful and supportive but doesn't really get it. (I've found the Spoons theory, he'll be reading that tonight!!). I know its possible to have both Lupus and Fibro but is this it? Am I going to spend the rest of my life tired beyond belief, not sleeping properly and hurting everywhere.

I know I sound sad and miserable and to be honest I am. I dont know what to expect or how I should feel or deal with this.

Any tips and advice would be most appreciated.
thanks
Mummatez xx

[SchroedingersCat]

If you're anything like me, you'll just get used to it and deal with it. I expected the diagnosis when it came as I already had 2 friends with FM, so it was perhaps easier for me than many, but here I am, still working, still running my house, still walking my dog, still doing all my hobbies, 2 years after diagnosis and several years after it all started. I have days when I'd like to curl up and cry but I rarely give in. You'll be fine once you adjust to the idea.

[EquineArcher]

Hi mummatez,

I am also new and also recently diagnosed although, like yourself, had symptoms for years.

The blood tests - have they tested your ANA's? If these are negative then it is very unlikely you have Lupus. If your consultant was thinking about lupus then I would assume this particular test was included in your blood screenings although it might be worth an ask just in case.

The only advice I have is to keep a Positive Mental Attitude (PMA). You are lucky to have a caring OH.

You'll get through this, I'm sure.

[whoami]

Mummatez......Welcome to our family.

When I was diagnosed 25 years ago, the Dr who diagnosed me also has fibro. He said to me, well, I have good news and bad!!!
Good news....I know what is wrong, you have fibromyalgia! Bad news....You are going to live a painfully long life!

I cried my eyes out. Not because of the bad news but tbe good. Someone believed me and validated my symptoms.

I can understand where this news may confuse you and leave you unsure of your future. First I will say...fibro is not a death sentence. With the help from your Dr you will find a combination of meds and treatments that will help you. It may take a little while to find what works for you. When you find that you will be able to lead a happy, productive and peaceful life.

You will have good days and bad. You may be able to work or maybe not. You will learn to do things differently so that you can continue to enjoy things you do now. For example, you may not be able to physically participate but you can participate in other ways. It is amazine how we can adapt.

Remember that there are a lot of us you can lean on and we can hold your hand during dark days.

The best thing you can do for yourself is to try to be positive. I know it sounds hard and you may think what is there to be positive about.
Just look at the negative, look at the only thing it is and the look around and you will see and find a positive side. No matter how small it will be there...baby steps.

[denys]

Hi and to the forum

[mummatez]

Hi ladies, thanks for the replies. I'm normally made of stern stuff and I suppose I'm just a bit angry with myself as this has knocked me for 6. On the plus side after years of asking, pleading and begging to be taken seriously I now have been. Yes the aha is one of the tests requested. She said all antibodies will be tested for. Oh and ordered x rays to rule out osteoarthritis! She really seems to be covering the bases and has referred me to the fibro clinic as well. All this in one 20 min appointment.
So that's a bit more info on me.
Thanks again ladies. Your all amazing xxx

[FluppyPuffy]

to our little sanctuary mummatez

I've done a bit of twiddling with your post with the paragraphs to make it easier to read. When reading a larger block of text, some of us find it difficult to keep track of where we have got to and can end up reading the same bit over and over

It sounds like the rheumi you saw was extremely efficient, which is just what you need when dealing with something like FM, Lupus etc.

How you're thinking and feeling at the moment is fairly typical after you've been told you have FM. Give yourself a little time for things to start to settle and make a little more sense, then you'll start to find your way thru this bit.

What the leaflet says about there being no cure for FM is right unfortunately At the moment, the best we can hope for is finding the right mix of meds, treatments and therapies to manage the condition as best we can.

Wrt to avoiding opiates, it is often said that opiates are ineffective in dealing with the pain experienced with FM. However, quite a few of us have them in our cocktails (codeine, Tramadol etc) as they are helpful to some. Maybe speak to your GP about this, depending on what you have tried/are currently taking, to see if this type of med might be suitable for you.

It is difficult for those around us to understand what we experience each day. It doesn't help that there isn't anything that most people have experienced that can be used as a comparison. Even tho he doesn't fully understand, having a supportive OH does make a real difference.

As to whether you will spend the rest of your days with poor sleep, being extremely fatigued, and feeling hurty all the time, it's not an easy question to answer. For some, they find they are able to manage their condition effectively that they are able to carry on with something like a normal life. For a few, they have periods where their symptoms can go into a dormant~like state and can do pretty much do everything they did pre~FM. For a significant number of us tho, things do change over time. In my case, over the years since FM started appearing, I've found myself becoming much slower in what I do as pain levels, stiffness etc have changed and increased.

Even tho things may change, it doesn't mean that the FibroDays are always dark and oppressive. As you learn more about the condition, how it affects you, and what your new capabilities and limits are, it is still possible to have some along the way. It may not be like how you used to enjoy things, but it is still possible to find yourself quite a lot For a lot of us, FM has helped us find pleasure in the smaller things each day that we might not have considered quite so much previously.

Take each day as it comes, or even each part of the day as it comes, and you will start to find things becoming a little lighter and brighter. It is quite a bumpy road, and it's not always an easy one to follow, but it is still possible to live your life with FM