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Discussion Starter · #1 ·
Hi folks,

Glad to have found this excellent site! I have had fibro since I was30 (now 46) also hypermobile joint syndrome, hypothyroid and endometriosis, what a healthy person I am!!

I come from Scotland but moved to Sweden (Scandinavia) last summer. I have 6 Chocolate Labradors, one geriatric Highland Pony and a little Shetland Pony. No husband anymore so on my own. I used to be a registered nurse but had to give up in 1992 due to my health.

The last 2 years I have been feeling worse and worse and not sure if it was a fibro flare or something else. Fatigue is terrible and literally can do nothing some days but sleep on the sofa under a blanket.

Had numerous blood tests over the years all clear but last spring I had a positive Rhuematoid factor and a raised ESR which was new. GP thought it might be Polymyalgia (which my mother had) or Lupus. Sadly I had a referral to Rhuemmy but moved here before I got an appointment. Having major hassles here trying to get to see a rhuemmy but thats another story.

Not sure I have lupus but think something is going on because of the blood tests. Its good to have a site where you can speak to others with chronic illness who understand and dont think cos you look "normal" there is nothing wrong with you!

Isobel
 

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Hello Isobel and welcome :)

Your name is spelt the same way as my paternal grandmother's was :)

I'm sorry to hear that you're having trouble getting to see a rheumy but otherwise it sounds like you are on the right track to finding out what's wrong.

This site is a great place for people all over the world to be able to share their frustrations and talk to others suffering from similar problems.

bye for now,
Katharine
 

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Hi Isobel,

Welcome to the site.

Moving when trying to get a diagnosis is never easy. Basically you are starting all over again. I wish you luck finding a good rheumy.

Take care,
Lazylegs
 

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Hi Isobel

Love your screen name but then I love labs :)

Will be interested in getting to know you. I am also a newby and still going through diagnosis process.

Jen x
 

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Discussion Starter · #5 ·
Hi folks,

Thanks for the nice welcome. I know what you mean about starting over, I used to complain about the health service in the UK but now I realise it wasnt so bad after all. I have had to wait 7 weeks to see my GP here and only got an appointment after losing it on the phone and ended up crying after shouting!

Out of curiosity does anyone else have a very low body temperature, when I have my worst days my temp is as low as 34.6 I can feel chilled through then get a bout of sweating, wierd or what?

Isobel
 

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labsrus;548941 said:
when I have my worst days my temp is as low as 34.6 I can feel chilled through then get a bout of sweating, wierd or what?
Hi Isobel,

I have been diagnosed with fibromyalgia since 1991 but some very strange things started happening to my body in 1985 including bouts of hypothermia (white as a ghost, teeth chattering, whole-body shivering cold despite curling up in bed under several layers of quilts and blankets while wearing several layers of clothes on an 80 F day.) Started having chills followed by sweats after my most recent bout of hypothermia in May of last year. My body temp has been as low as 95 F.

I hope you're able to receive care soon :)

Barb
 

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Discussion Starter · #7 ·
Hi Barb,

Sounds pretty similar though I cant work in Farenheight so had to google it, 95 F is 35C. I dont know whether its fibro causing temp drops of hypothyroid or something else, but I have noticed when I feel really bad with fatigue thats when my temp is low. Its like my body is shutting down and I have no energy for anything.

Today is one of those days unfortunately, wish I could go to bed and wake up with a different body:lol:

Must drag myself to post office today as sending letter registered delivery to the chief administrator of health center as phonecalls and letters to GP have been ignored so I still dont know latest blood test results or if I have been referred to rheumy, doubt it though as the attitude here seems to be "not my problem".

I get so angry at them and having to fight for everything as I just dont have the energy right now but dont want to fall out with doc then I will never get referred.:sad:

Hope you are having a good day.

Isobel
 

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labsrus;548979 said:
Its like my body is shutting down and I have no energy for anything.
That is exactly what it feels like!

It's not the fibro causing the low temps. It may or may not be thyroid related --- I'm not hypothyroid but I do have nodules on my thyroid that everyone refuses to biopsy because they say they're too small.

I do have an autoimmune disease but they haven't decided which one. I meet 8 of 11 criteria for a diagnosis of lupus but because I haven't tested positive for anti-DNA, and because C3 is normal and C4 is high, my rheumatologist is reluctant to diagnose me with lupus. He's leaning toward a diagnosis of Undifferentiated Connective Tissue Disease at this time but lupus has not been ruled out. He was going to label me with MCTD until I pointed out that I have tested negative for anti-RNP at least twice (a positive test is required for a diagnosis of MCTD under both new and old criteria) I have a lot of skin and CNS issues so I will eventually be diagnosed with an autoimmune disease that encompasses both skin and CNS involvement.

It is very draining to fight for the proper care, especially when we have so little energy and poor health, but what else can we do? I've tried going without care and that didn't work very well either!

I hope you hear from someone soon --- perhaps today will be the day!

Barb
 

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Discussion Starter · #9 ·
Hi Barb,

Hope you get a diagnosis soon. I feel that a diagnosis of connective tissue disease is a bit like saying we know you have something wrong just not exactly what. Still its good to finally get a name to put to an illness as maybe then people who think we are just being lazy might be convinced otherwise.

Letter to health centre now sent registered delivery so they cant ignore it (hopefully) and have asked for e response within a week so watch this space!

My temp today was 93.5, think I must be going into hibernation:eek: How I wish for some sunshine as that definitely helps, its usually hot here in June but this is the worst weather in june for 50 years, I hope I havent brought the Scottish weather with me when I moved!

Take care

Isobel
 

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Back at the beginning of my journey with diagnosed lupus, over 20 years now, I would "drop" a fever, rather than spike one. I would easily go down to 95.3. I remember getting under my electric blanket, turning it to the highest setting and piled on throws, etc. I felt sluggish like things were moving thru jello to try to get done.

I've talked to several other people who have done this, but the doctors tend to poo-poo us. I don't know if I went lower, as my thermometer then only went down to 95.3. I routinely run a lower than normal temp anyway. My routine is 97.3 or there bouts.

I would suggest you keep a log of the times your temp goes way down so you can show it to the rheumy (when you get in).
Sally
 

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Discussion Starter · #11 ·
Hi Sally,

Interesting to know the same thing happens to others. I have been keeping note of my temp but only taking it when I feel bad so maybe I should try and do it daily for comparison and take it to rheumy if I ever get there.

Thanks for the tip.

Isobel
 

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Discussion Starter · #13 ·
Hi Sally,

My normal temperature used to be around 98.2 - 98.4 so going as low as 93.5 is a new thing for me. Not sure how long it has been that low as had not checked it for a long time. On the days when I feel better it can go up to 97.7 so there does seem to be a correlation between how I feel and my temperature.

Now when I get a cold / flu and feel feverish I dont actually have a high temp, it does go up slightly but not a lot and not what you would call a fever temp. There is definitely something strange going on with my body.

I can certainly relate to the blankets extra clothes etc and heating turned up but still feeling cold, my ex hubby said I was frigid, maybe he was right after all!!

Isobel
 

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I can certainly relate to the blankets extra clothes etc and heating turned up but still feeling cold, my ex hubby said I was frigid, maybe he was right after all!!

Isobel

ROFL - LOVE this one! Or maybe he was just in musth (elephant in rut) and would not admit it!
Sally
 

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Discussion Starter · #15 ·
Well he didnt bear much resemblance to an elephant if you get my drift;)

Every time I had a bad flare he went into a mood which really helped me feel better so I ditched him for my health and sanity!

Ice maiden takes on a new meaning these days!

Isobel
 

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Isobel,
Hi and welcome to the site. I want to say that if all your dogs are as beautiful as the one you have shown us you are a lucky person. Do you have a new gp where you are now? If so talk to him and see if he would not help you with the referral to see the rhuemy. He may even want to be able to contact your other doctor for those tests that were done for himself.

I hope that all works out for you and that you get the appointment that you sound like you need. If there is anything we can do please let us know. I hope you are feeling well and doing well most days.
 

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Discussion Starter · #17 ·
Hi Tammy,

Thanks for the welcome. My dogs are all pretty but Chino in my avatar is particularly cute if I say so myself!

I have seen my gp here after waiting 7 weeks for an appointment, she did bloods said she would be in touch about who to refer me to (I said was waiting to see rheumy back home) as she wasnt sure who to send me to. I missed her phonecall as I was upstairs dressing and couldnt hurry downstairs. After several calls to the health centre who said she would call me I wrote a letter, no reply, then sent it again still no reply. Now have written to health cntre boss and waiting to see if I get a response but not holding my breath. Not sure who to go to next but getting quite depressed about things. If I had known how bad it was here i might have had second thoughts about moving but hey ho am here now and cant afford to go back so will just have to make the best of it.

Sorry on a bit of a downer today, pouring rain and just had to deal with a blocked septic tank and half my garden dug up culminating in a bill that wipes out whats left in my bank account:eek:

Its good to have this forum to let of steam, thanks for listening.

Isobel
 

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Sounds as though you have had a nightmare day. Sorry that you have had to go through this. I hope that things improve for you soon.

Take care

Deb
 

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Discussion Starter · #19 ·
Hi Deb,

Thanks for the sympathy! Not my best day yesterday but sun shining today so trying to think positive and ignore my forthcoming bankruptcy. Who needs money anyway:lol:

Hope you are having a good day

Isobel
 

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Discussion Starter · #20 ·
Hi folks,

Finally got a letter back from gp and said my blood test (of 21 april) showed no sign of rheumatic disease or inflammation. had to get thyroid checked again which I did today as said it was a little high. It has always been at bottom of scale ( have been on meds for several years) and I show all the signs of being hypo not hyper.

Scared when I finally see her she will just lower my T4 & T3 and I will feel even worse. Anyone any ideas on how to push for a referral as I cant go on feeling like this..?

The other problem is results come back in a week but she goes on holiday for 4 weeks so could be another long wait!

Yours in desperation

Isobel
 
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