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Discussion Starter · #1 ·
I am brand new here and Im also looking for answers/help/guidance. I haven't had an RA test, my sed rate was 4 so I think that is fine however my ANA test was 1:1280 positive speckled. The doctor said maybe lupus, maybe something else? I have an appointment with a rheumotoligist in mid oct but wish I could have answers now. Have a history of rheumatoid in my family and thyroid but my thyroid levels are fine. I am extremely tired all the time and have a toddler and a baby to care for. Any suggestions on how to move past this heavy fatigue? Thank you so much to anyone with info!
 

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HIya.. Iam glad you have an appointment in Oct, you need further testing.. ultimately if there is something going on then the meds will help with the fatigue once you are started..if appropriate:lol: go to the appointment with a daily diary of symptoms/fatigue etc..grade any pain 0-10 and take photos of any rashes, swellings etc... the only other advice at the moment is to eat well, keep hydrated and pace yourself... you can't push through the fatigue and there will be days you need to slow it right down, if you don't you may find you get a knock on effect..or payback day as I call it!!!:( It can take a while for some answers so be patient and don't expect any in the first appointment.....at least you are moving towards some answers, action and improvement hopefully....take care,
Claire XX Oh and welcome to the site..a great place for warm, intelligent advice and humour!!
 

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Hi there Ceryl and welcome to the site!

Make use of the time until your appointment in October by gaining as much knowledge as you can!

Keep a diary of any current health issues, research family health history and also yours since birth.

Take a look at the link below to see if anything sounds familiar:

http://www.uklupus.co.uk/lsymp.html

With regards to the fatigue, make sure you don't overdo things, pace the day and make sure also if you have one busy day, rest up lots the next....easier said than dont with a toddler and baby!

Let us know if you have any other questions...we are here to support!

Take care,
 

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Hello Cheryl and :welcome:

Heavy fatigue is one of the biggest and most disabling problems that many of us face. Unfortunately there is no "simple" answer to it. Obviously, once you are on medication for whatever is going on that should help a lot. Learning to pace yourself is also a great help but takes a good while to learn to do effectively (and is very difficult with young children).

Another thing which can help but is harder to see in the beginning is some regular (but gentle) exercise. Exercise is a difficult one as there is no "one-size-fits-all". Some people may have remained relatively active (if their symptoms allow) while others have had to dramatically reduce what they were doing. Finding how much you can do and what suits best is very much a case of trial and error. I have my "minimum" each day of having to keep the dog walked but it's a very gentle walk many days. Others I'm able to do some cycling (on the flat) or a little swimming (no Olympic contention!).

With treatment and time you will find best how to deal with and manage your fatigue. Often, even just prioritising is very important as you look at what is truly important in the day and make "choices" rather than use up all your energy in one go.

The link below, although written to help "others" understand, helped me to realise how I had to manage my energy reserves.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Bye for now,
Katharine
 

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Hi and welcome to the site. The others have given you great advice. Maybe you could join us in chat sometime!!

DEb
 

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Welcome & Hi.
 

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You may want to seek out an endocrinologist. Have you had any antibodies tested yet for the thyroid? Some people will appear to have a good level of circulating thyroid hormone but will still have thyroid antibodies. There was a good link/article provided on that somewhere (I'll look for it)... on how sometimes more testing needs to be done than just TSH to rule in/out thyroid problems.

I mention this mostly because you only mention fatigue and a highly positive ANA... but no other symptoms? Do you have dry eyes? Sore joints? Are any other bloods off such as showing anemia or low white blood cells? If you don't have any other symptoms then you would be unlikely to get an autoimmune connective tissue disorder diagnosed at this point; but clearly something is going on that needs to get sorted out.

Good luck to you - I hope you get some answers soon and put an end to that awful fatigue.
 

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Hi Cheryl,

That is a very high ANA but I do tend to agree with Maia, that you should be tested for thyroid antibodies, even if your function tests were ok (TSH, T3 & T4) just to make sure that's not causing the problem.

It could be so many things as your symptoms aren't that specific for Lupus. However have a look at the criteria used to help diagnose Lupus and maybe there are things there that you haven't mentioned/didn't think were relevant.

love
Lily
 

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Discussion Starter · #11 ·
thanks!

Thank you for all the help! Im just trying to take one day at a time. I have had a couple of fairly good days where Im not so tired in the morning...yay! But the fatigue does set in as the day goes on. These are the tests that were preferomed for my thyroid.....thyroglobulin antibodies peroxidase 20, antibodies 10, T3 total 131, T3 uptake 33, T4 Free 0.9, T4 Thyroxine total 6.4, Free T4 index (T7) 2.1, TSH 3rd Generation 0.67.....I dont know myself what those mean but my PCP says they are fine. Awaiting my visit to the Rheumotologist. In addition to my fatigue I do experience pain in my body where I cant sleep and at time worse where I cant take the pain but have always just thought My back was causing nerve pain throughout my body? not sure? My mother who has rh arthritis and low thyroid wants me to visit a endo also but so far only have a referral for rheumotologist... Anyways thanks again to everyone for the advice!! I appreciate it!
 

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Discussion Starter · #12 ·
Oh also just thought I should mention the pain I feel is sporadic and not ongoing. It will come and last for a day to a week or maybe two weeks at most and then be gone for quite a while..so I can handle that. The everyday fatigue is much worse to cope with. I need more energy!!
 
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