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Discussion Starter #1
Hi.

I am going to be re-tested for lupus, and have previously been diagnosed as having fibromyalgia. Here's some of my long list of symptoms

extreme tiredness/non refreshing sleep
pain (most joints, muscular too if been active)
clicky and stiff joints
frequent coughs/sore throats/colds
lose concentration
a bit depressed
twitching/jerking muscle spasms
gastric reflux (endo & biopsy = heli pylori bacteria, was treated but still get reflux :()
feeling like room is rushing about/vertigo
headaches, often persistent
cold hands and feet, even on scorching days like today!
feeling like face is scalded where butterfly rash would be
dry patches of skin
itchy skin when been outside
feeling like there is pressure in my eye (gets sore and eyelid droops like I'm having a stroke)
chest pain (thought I was having a heart attack at Xmas)
increased need to go to loo (could pee for Britain)
constipation vs not quite diahorrea
changes to glasses prescription (find it difficult to focus sometimes)
eyes feel tired and sticky, and sometimes gritty (find it hard to create tears when I really need to cry!)
abdominal pains/wind
knee used to dislocate til I got it operated on
dry/itchy scalp (feel like I have nits sometimes haha)

probably a few more, can't remember them all, so really should make a proper list to prove I am falling to bits lol

Just got to find out now if I do have lupus and which ones are due to fibro and which ones potentially lupus.

Noticed the gastric reflux thread - could be an own it's own symptom rather than med related - mine was originally due to the pylori bacteria thing, got treated, but still suffer bad gastic reflux, not caused by an ulcer, as I had the endoscopy thing to check. (I wimpped out and got sedated for mine lol)
 

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The Other Illinois Tammy
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It is worth a look into. When you make the list to take to the doctor make sure to mark what is caused by fibro and what could be fibro. The rest need to be looked into as to what is going on. I know your concern, as I have great concern for my own daughter to have lupus. My fingers will be crossed for you to not be lupus positive.

I do hope that you feel better soon.
 

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Hi,

That's quite an impressive list :( I'm glad you have decided to get everything checked out again. I would just present the list to your doc, it's up to him to decide what is fibro based and what may be something else ;) besides they don't like being told their job :lol:

With vitamin D deficiency you can have some muscle twitches and spasms.............that may not be the cause though, I got my levels back up and still had problems with twitching and tremors etc. You may need to see a couple of specialists (which the Rheumy would probably organise). Your eye problems especially need an Opthamologist and if they find nothing then that along with some of your other stuff should be checked out by a Neurologist. Actually I wouldn't delay the Neuro, I think those symptoms (headache) etc. need some investigation sooner rather than later.

love
Lily
 

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Hi Lily,

writing a list makes me look a proper hypochondriac haha.

I have had my eyes tested again by a local optician, as I knew the GP would suggest that prior to anything else. My prescription had changed again, but sometimes even wearing the glasses things still aren't totally focussed. With or without glasses on, if I'm reading or something and then look up it takes a few seconds for my eyes to re-focus, and sometimes I sort of 'drift off' in a world of my own and find it quite hard to get back into focus. The optician did extra tests due to the droopy eyelid (typically it wasn't drooping when I had the appointment!); she did some glaucoma tests, and some where I had to click when I saw a smudge on the screen, think that was to check the peripheral vision and nerve function. She couldn't find anything obviously wrong though. I have glasses for reading and watching TV, but did say I felt like I need glasses for all day wear, as my eyes get tired and strained feeling, and even asked for bi-focals or something, but nope, never got them, said I didn't need them.

am I better to give the GP the list or wait for the rheumy? (Just wondering if rheumy better as rheumy always did the blood tests etc previously, not the GP).

Also sometimes get little watery blisters on the roof of my mouth which can be very painful, and a very dry mouth/furry tongue. I have had a lot of problems with oral abcesses since I was a teenager, and lost some teeth as a result, so will add them to my list lol.
 

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Hi M

would get appointment with rheumy as most GPs are out of there depth with Lupus u get more specialised bloods done with rheumy

tc
dixy
 

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Madcow,

We all feel like hypochoriacs from time to time even with diagnoses!

I'm not sure that eyes taking time to re-focus is a big issue, but its something to keep your eye on!:wink2: I get this problem, but it is due to one slightly long-sighted eye and the other being shorter sighted...conflict going on, b ut i also dont need to wear glasses!

Something to look into with regards to drifting off into world off your own... not saying you could have this but there is a mild type of epilepsy (not sure of the name) that has similar symptom..might be worth googling and see if you have any of the criteria.
 

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Don't worry about the length of your list, believe me I have seen longer :lol: and it's just stating fact, nothing to do with hypochondria - the more they know the more they can help you.

I would save the list for the Rheumy, if your GP doesn't think there's enough going on to warrant a referral then I would run the list by them too.

The drooping eyelid could be something like Ptosis, or it could be another problem. The Rheumy may be able to address it, if not then a Neuro workup would be a good idea. Ptosis (IF that's what it is) is caused by weakness of a muscle supporting the eyelid. Mine is from nerves being attacked, sometimes it's worse than others. Nerves control muscles...........

love
Lily
 
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