newbie question: fibro developing from ME/CFS?

Hi, I've just stumbled onto your forum after googling for fibro information and found loads of useful information on here!

I've had ME/CFS for about 12 years now, but only ever had slight aches in my leg muscles until recently. I moved house in March and around then, possibly due to the additional stress, I started getting strong pains in my fingers when my tiredness levels were high.

Over the last few weeks, that pain in my fingers has started in my toes, and has now spread to my arms and leg muscles and can be really strong at times! I also have had patches of skin which have felt grazed and i've been unable to touch them or have clothing on them without them stinging like i'd either freshly grazed them or burnt them.

I was wondering whether this sounded familiar to any of you as fibro symptoms and whether you felt that there was a chance that my ME is now changing to become fibro, or if it's possible that I've developed it along side.

I have a GP appointment booked for tomorrow morning, but I don't know whether to tell her that I think it may be fibro or whether there was anything else that I needed to consider as a possibility?

Any and all advice is very much appreciated!!

Thanks!

Hi, Eggotchi, and welcome! Yes, those symptoms can be fibro symptoms. The muscle and burning pain happen to us but there are other illnesses that have many of the same symptoms as fibro. Usually your doctor will run a myriad of tests to rule out the other illnesses before a diagnosis of fibro is given.

Your CFS wouldn't be changing. But you could have developed fibro along with CFS. Many of us have multiple things wrong with us. Some have fibro and lupus, fibro and Lyme disease, etc.

The best place for you to start is by reading Fibro 101...the first thread on the forum. There are links to good information and you will learn a lot there. Since you are in a hurry, start with the links called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there.

Please get back to us after your doctor's appointment and let us know what happens because we do care about you. We've all been in your shoes.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Thanks for the replies.

I spoke with my gp today and she said that it might be the ME, might be fibro and might be something different such as problems with thyroid or b12 so I've got to go for a blood test to rule some things out. Think she is concerned about my nerves as well as I'm diabetic... so time will tell. Guess it's back to the old diagnostic issues again!

It sounds like your doctor is being quite thorough and that's exactly what you need!  Other illnesses need to be eliminated before a diffinitive diagnosis of fibro is given and it sounds like that's exactly what your doctor is doing.  I go through so much blood work frequently.  My doctor checks so many things twice a year just to make sure nothing has changed since our symptoms can be symptoms of other illnesses.  I always tell the nurse that I'm not giving a blood donation.    

 

Let us know what you find out.  Meanwhile do check out Fibro 101.  There is a good chance this is what is going on with you.  You'll find out soon enough, I think.

Sherrine 

Immune can also mean lupus, and other goodies. You didn't mention any gastro.... or did you?

That is how I normally sleep, with the pillow to grasp . Sometimes a hot bath or a heating pad will help with some of the pain.

Did your doc prescribe any painkillers? Are you currently on some sort of sleeping med? With fibro, it is often difficult to get good, restorative sleep, which makes the pain even worse. Keep moving, for being still or staying bed makes it all worse.

It is very alarming at first. Talk to your doc when the test results come back.

Oh, sweetie, we all go through periods of feeling lost and exhausted, no matter how long we have this condition.

In my opinion, it feels worse in the beginning. Because it's new... and so seemingly never-ending. Later, it just becomes part of the whole, if you know what I mean. I guess you get used to it, though that sounds far bleaker than it actually is.

Perhaps talk to the doc about a muscle relaxer. Many of our members here have really good luck with this before bed. I have to say, it really helped me.

Hello eggochi,

I think that sometimes fibromyalgia symptoms can develop from disordered sleep - and since you have had chronic fatigue syndrome for so long, it could make sense that you would eventually develop fibro as well.

I have exactly the same kind of trouble sleeping that you do. I eventually found one almost-comfortable position, but it's really hard to get into and I can't stay in it for too long when I do find it, because stiffness increases my pain :(

When I first started developing of symptoms of fibromyalgia (I say "symptoms" because I'm still in the process of being diagnosed; they are still exploring other possible conditions), it seemed like the world had come to an end and that I couldn't possibly have any life from then onwards. Eventually, I realised that this was a new challenge to overcome, a change to adapt to but not something that had to bring my life to a screeching halt. It has changed my life, but they're not all bad changes - in fact, some of them are really good!

I realised that I could even let the pain, fatigue and various other symptoms change my life for the better (believe it or not). Having these experiences has developed my character and personality so much - in a negative way at first, but then in a positive way once I changed my outlook. For example, being able to smile, listen to and encourage others without thinking, "How can you go on about that? Don't you realise the pain is killing me here and about I'm about to go into a coma from exhaustion?" but instead thinking, "this is really hard for them to go through; maybe as hard for them as my FMS is for me." But wow... took me two years of chronic pain to get to this stage!

Don't get me wrong; it's still REALLY hard sometimes, and sometimes I am Miss Grumpy (but only with my close family) if I am having a bad flare-up.

There's light and dark in everything we go through in life. FMS is one of those things.

You can make it change you for the better too :)

My overall pain has decreased from what it was with treatment of my underlying and coinciding conditions. Maybe yours will too. I hope you do feel better soon!

Jasmine

A rheumatologist will check your blood work, possibly order some more tests and confirm or deny the diagnosis. This is fairly standard for a diagnosis. A rheumatologist will also have a better grasp on the condition and what you can do about it.