Lymes fibro or cfs?

I have been experiencing some symptoms which seem to be getting worse. Have not been well for about 3 years now. My gp isn't very good and I feel like I am a bother as I'm there so often. They put it down to stress from losing my mum and so did I until recently as I've had 4 kind of blackouts fainting seizure type spells twice while I've been out and twice at home the last one was the worse. I get it if I stand or walk about it comes on suddenly and it goes black and I feel myself going afterwards I go into a cold sweat shake and have headache. This leaves me weak for a few days also. I am constantly tired with no energy to even do simple things and the tiredness and weakness is the worse for me as well as the blackout feelings. I feel as I'm about to die and am now scared to go out as soon as I have to stand still in a queue in a shop I feel it coming on and I have to keep moving around to prevent it happening. My head feels full of fog also and headache constantly I even feel dizzy if im sitting down at times. I have trouble getting to sleep and staying asleep and never feel rested in the morning. I have chronic pain in my neck shoulders and sometimes stabbing pains in front of neck and in other places in the body. I have lower back pains daily I have arthritis in my knee also. I have sleep apnea and Tmj which causes my face to hurt and I have to sleep with a mouth guard I've had made. I have carpel tunnel and get pins and needles daily and drop things alot. I have ringing in my ears and deafness. I suffer chronic migraines and silent migraines it alternates I get visual aura and can't see properly for up to four hours sometimes. My periods are off the hook so heavy clotting and pains even before they start. My memory is getting worse and people notice it around me i can't remember things I've done in the morning by the evening. Bright lights hurt my eyes and make my head hurt and fainting feelings worse. Am not sure what I should do and would like to know of anyone who has similar symptoms. Do I go to my gp with a list of symptoms written down do I ask for an mri or brain scan, at my wits end can't live like this any longer but don't really know how to get my gp to take notice and not blame it on stress.

Look into POTS, or Postural Orthopedic Hypotension.

There is a lot of contention regarding whether Fibro., CFS, and Lyme are all the same illness, or not.

The Lyme people say Fibro. is really Lyme, and the Fibro. people say Lyme is really Fibro.

My guess is that they somehow belong together, but since Fibro. is just a syndrome, or a collection of symptoms, I think there must be something underlying the Fibro.

Have you been tested for Lyme? Or MS for that matter?

You also need to see a neurologist, and have a comprehensive neurological panel done. I would get checked for encephalitis and meningitis. Severe headaches can also be a sign of a tumor (benign or otherwise).

Margaret

It is probably not much help but the way I differentiate between lyme and fibro is by getting the answer to this question......"if left untreated, will this kill me?"

I believe fibro is much more painful but it is not necessarily fatal whereas
Lyme needs treatment to keep us viable but as a consolation it is easier to get rid of than fibro. I may be wrong but that is what I have been lead to believe. I was asking myself the same questions as you are and although Lyme disease sucks royally it was still the diagnosis I wanted because I didn't want to spend the rest of my life in pain, I could avoid that better by having lyme.

Good luck - I hope you get the result you want soon.

If a doctor were to tell me that it is all in my head I would get all dramatic and say "so are brain tumors - are you telling me you would not treat them either?"

Oh ffs, if you were to imagine anything you would be more likely to imagine you are Joan Jet singing "Don't You Want Me Baby" with Marilyn Manson, at least I would. Who would imagine disease and sickness?

Hey Eulalia....I noticed you referred to him as your GP. I am guessing you are British.... if so, me too although I live in America so I have had to get used to the PCP thing (Primary Care Provider)

Yes they are pretty good here if you have money, if not it's a real struggle.

I was born in London....Wandsworth.

Lymelymie, so do you believe they are separate illnesses? Just curious.

Not to be a downer, but I never heard of Fibromyalgia going away. I guess some cases are more treatable than others, depending on what's underlying the Fibro.

Margaret

Eulalia,

So sorry to hear you are going through this. Your story sounds so much like mine.

I started getting really tired. I felt like I couldn't keep up with life any more after being very active and fit. At that time I didn't really realize that something was going terribly wrong. I just kept trying to push through it.

Then a few months later I started to pass out. They call it pre-syncopy. It happened to me 3 or 4 times where I would feel like all the energy drained out of me and then I would pass out - or almost pass out. I could hear people talking to me after I collapsed but I could not answer them for a minute or two. Afterwards I would be drained for days or even weeks.

Dizziness is also one of my main problems. Many of our symptoms are the same: silent migraines, fogginess, problems staying asleep, stabbing pains, TMJ, carpal tunnel, and just about every other one you mentioned.

I have been really sick for 2 years now and just started feeling a bit better the last few months. I have a clinical diagnois of Lyme Disease and Babesia which I have been treating with herbal products since October 2013. I am finally sleeping a bit better, have less pain, and have a tiny bit more energy. When I was at my lowest I was barely able to function. I couldn't lift the blow dryer to dry my hair and I couldn't stand up in the shower. Cooking was extremely difficult. I had to hang onto the counter for support.

I still often struggle with dizziness and fatigue but at least now I feel there is hope because I am improving.

I don't know what it is about standing in a queue or line-up as we call it, but it is a problem for me too. It almost seems that when I am moving around I don't notice my symptoms as much but once I am standing in line it's all there is to think about and that makes it worse.

It really sounds like Lyme to me. Yes, I think you should write down all your symptoms and take it with you to your doctor. Most doctors who are not Lyme literate will try to pin it on stress or anxiety or depression. One doctor told me it was anxiety and another told me it was peri-menopause related. Then I finally found an LLND who really understood what I was going through and diagnosed it as Lyme. It was wonderful to find someone who truly understands.

It is wise to get tested for other things too. An MRI would be good, but try to find a Lyme literate doctor. Wishing you the best of luck. I know exactly what you are going through. It's tough, but you are on the right track. Keep going and don't give up hope!