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Old 11-02-2009, 03:15 AM   #1
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Beyond Fed Up Now

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

Last edited by moderator2; 11-02-2009 at 04:47 AM. Reason: please do not post pictures - as per the posting policy

 
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Old 11-05-2009, 09:15 AM   #2
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vtron HB User
Re: Beyond Fed Up Now

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!

 
Old 11-05-2009, 10:34 AM   #3
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Re: Beyond Fed Up Now

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.

 
Old 11-05-2009, 11:39 AM   #4
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Posts: 1,209
wakkochic17 HB User
Re: Beyond Fed Up Now

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!

 
Old 11-05-2009, 09:54 PM   #5
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BeHappy2 HB UserBeHappy2 HB UserBeHappy2 HB UserBeHappy2 HB User
Re: Beyond Fed Up Now

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

 
Old 11-06-2009, 10:13 AM   #6
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Location: Burnet, Texas USA
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Re: Beyond Fed Up Now

Many of your symptoms indicate Fibromyalgia. Fibro is a real disease that doctors have a hard time accepting since they have no tests to prove that is the problem. They test for other things to rule them out, there is no test for Fibro.

Some of your symptoms could be due to thyroid not working properly.

Fibro is miserable.

Hope you get a proper diagnosis soon.

 
Old 11-07-2009, 01:02 AM   #7
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Location: Nottingham, UK
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FrustratedMum HB User
Re: Beyond Fed Up Now

Thanks everyone for your replies.

I spent the day yesterday ringing the hospital getting passed from place to place for answers!! Eventually a nurse rang me back but she might as well not bothered, she told me that my results were back but she didnt want to tell me what they were as itss all about what they mean so I should wait for a letter from my rheumatologist which she ensured me had been written.

Hopfully shouldnt be much longer before I have another appointment.

 
Old 11-18-2009, 10:36 AM   #8
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venus777 HB User
Unhappy Re: Beyond Fed Up Now

Quote:
Originally Posted by FrustratedMum View Post
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

 
Old 11-18-2009, 10:41 AM   #9
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Join Date: Nov 2009
Location: london
Posts: 3
venus777 HB User
Re: Beyond Fed Up Now

I have only just registered and at random read the problem you have.Im so sorry and feel sad for you.my mum suffered similar symptoms and now is also waiting to get back results.Iknow it can be frustrating that they cannot rule out what it is but im sure theyl get there in the end.Just try not to worry -easily said I know,but you make it worse on yourself,try to block it out and go out with friends to take mind of things cos it will take over your life,and will affect your children and your relationship with them too.Good luck .I have to clean the house now before my hub gets home and gotta pick him up.I am a mother of 3 under 6 year olds and i am 30.Best of lucklive life and try to enjoy the good you have in it!!

 
Old 11-18-2009, 10:44 AM   #10
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Join Date: Nov 2009
Location: london
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venus777 HB User
Re: Beyond Fed Up Now

let me know what the diagnose is?good luck

 
Old 12-09-2009, 10:13 PM   #11
pfm pfm is offline
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Join Date: Dec 2009
Posts: 5
pfm HB User
Re: Beyond Fed Up Now

Have you been tested for Lyme Disease? If not, makes sure you get more than just the Elisa test. There is a Western BLot which is also not very accurate but better. My daugther has Lyme and she was tested at IGENEX in California, a better lab with more sensitive testing results but you have to pay out of pocket and get reimbursed by insurance. Many doctors don't even know about this place. Check out Lyme Disease. You'd be surprised how many people have it and don't know it and the symptoms you describe fit.

 
Old 12-11-2009, 07:53 AM   #12
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Join Date: Dec 2009
Location: N.H., USA
Posts: 17
lymemom2 HB User
Re: Beyond Fed Up Now

I'm so sorry you are feeling so bad! I have gone through the same experience. Every aspect of my life was effected. It is so hard to not know what you are fighting and therefore how to fight it! I have Neurologic Lyme disease. Several years ago I was diagnosed with Fibromyalgia with a moderate ANA. I was tested 2x for Lupus and spent 2 years having MRI's every 6 months for MS. I had/have just about every symptom on your list! Regarding Lyme tests, you really need a lyme literate LLMD doctor to make a decision based on history and exposure also any postive protein bands you may have on your test. Your test can be negative and you still can have Lyme especially if you have had it a long time (Latent Lyme disease). Also I have Hypothyroidism. A thyroid condition even slightly high or low could account for some of your symptoms, like hair loss, fatigue, sleep issues, muscle pain and restlessness. I also have TMJ and restless leg syndrome. The specialist I see in NYC is the co-founder of ILADS (International Lyme and Associated Diseases) which is the CDC's opposite in the world of Lyme. He feels that Fibromyalgia is a red flag to something else like Lyme or Lupus. If you get a chance read my other threads for more info. Try to keep your social relationships up for support, and exercise really may help even if its just daily stretches. I also found diet changes helpful like cutting out most of the dairy(made my muscles hurt) and gluten (I have digestive and absorption problems) and sugar(low blood sugar can make you feel awful). I did a 3 month exclusion diet to find my triggers now I try to have protein at every meal to keep my blood sugar even. Take care!

 
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