Beyond Fed Up Now

♥Maya♥

New member
I am posting here purely out of frustration at my lack of diagnosis. Back in May/June I noticed stiffness and swelling in my wrists that I realised had actually been there for a while but I'd only just started paying attention IYSWIM. Gradually it got worse and worse until I would wake up every morning barely able to use my hands or stand up on my feet. I wake up completely stiff and in alot of pain.
I also noticed how constantly tired and achy I was. I had always put it down to having 3 kids but have since come to realise that my fatigue is not normal, I am exhausted all the time and sleep does not refresh me.
I eventually went to a GP in June who did some blood tests which came back clear. I went back to the GP who did more blood tests which also came back fine, but this time he referred me to a physiotherapist. When I saw him he agreed something was wrong but said it was systematic not physical and suggested I be referred to a rheumatologist.

I had my first rheumy visit on 23rd October. He didnt really tell me much, he just said he suspects a form of autoimmunity and he did some more bloods. I am still waiting for results to come back for him to contact me again but on ringing up so far I have managed to find out that my ANA result came back positive but only weakly positive. My WBC is slightly low and he is just waiting on my ENA results now.

I am just fed up of feeling like this and not having any answers. I wake up in pain everyday, I spend my life tired and in pain. I have no relief except Ibuprofen which does nothing. I have no explanation for it so its really hard trying to tell people why I am in pain, or why I dont meet up with friends as often as I used to. I am overly emotional at the minute due to the frustration. I am just desperate for an answer, a diagnosis of some form that at this minute, I would even take a bad diagnosis over nothing at all and I know how messed up that must sound.

I have written down all the things I find wrong with me...some may not be linked to anything but I figured it was best to write down everything just in case.

Wrist and hand swelling.
Morning stiffness and bad pain in hands, wrists and feet.
Severe fatigue.
General achiness in limbs.
Extremely painful feet when standing and walking.
Constant sore throat.
Slight hair loss.
Aversion to bright light, artificial and natural.
Restless Legs when trying to sleep, legs have sudden urge to kick about and move!
Trigger finger?? Brusing on knuckles and tendons, stiff painful fingers, restricted movement.
Skin sensitivity - including aversion to heat.
Occasional tingling/burning sensation in hands.
Dizziness
Heart palpatations.
Memory loss, poor concentration.
Tickle/stroke arms and hands in my sleep.
Struggle to sleep.
Common headaches/migrane?
Overly Frequent urination
IBS/constant bowel changes.
Cold hands and feet.
Depression.
Mood Swings.
Jaw/tooth ache. I clench my jaw during sleep and wake up very sore.
Swollen/bleeding gums - only when brushing.
Tender Bones.
Little to no sex drive.

So so sorry for the LONG post. I just wanted to get everything written down (although I have more than likely forgotten something important!)

Im not sure what replies I expect, just maybe some guidance as to what it could be? What I could do to help myself?? Just some hugs!

Thanks for reading. xxx
 
Wow... What a list! I can't imagine enduring all of those things as you have. I am not a doctor, nor have I ever seen what you have descibed in your hands and feet, but I can talk a LOT about the stress you must feel.

Your mental state is probably exacerbating several of your symptoms, the lack of sleep, headaches, depression, mood swings, poor concentration, etc.

You seem to be mentally tied up in these painful symptoms, and that is no doubt not helping. =(

When something is going wrong with me, I am the same way, I become all consumed by it, and it jacks with everything else. I can certainly empathize.

Keep on pursuing doctors to try and get some answers, but maybe look into some things that could help you cope with the stress and frustration too. Just talking to someone may help.

I do not have your answers, but I do hope all the best for you!
 
Have they checked for Lyme Disease and Lupus? Many of your symptoms can come from these two diseases that are undetected. I hope you find some answers.
 
I agree it sounds like some sort of autoimmune disease. I think you are on the right track seeing a rheumatologist and may just need to give it time to be sure you get the right tests/diagnosis. I've been tested on more than one occassion for Lupus but ANA comes back negative each time. I do agree with renko on checking into Lyme disease if the rheumy comes back without an answer for you!
 
I sure can understand why you are fed up and needing a diagnosis.
You are definately in the right direction having a Rheumatologist .
i have many many of the painful symptoms you are describing.
My Rheumatologist diagnosed me with Fibromyalgia and i also have the positive ANA as you also mention. Their is a Fibromyalgia board here also that you may relate to the postings there.

Please keep us posted with your test results when you get them.



Be Well
BeHappy2
 
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