View Full Version : Hello There

01-17-2012, 01:17 PM
I have just found this site and thought I would say hello.

I live in the UK and so far have been diagnosed with MCTD, Sjogrens, Raynauds and SLE.

I've had a nightmare recently with overwhelming fatigue which is partly what brought me to this site. I was admitted to A&E (The ER for non brits) on Sunday afternoon by an on-call GP as I went to sleep on Saturday night at 8:30pm and my husband couldn't properly wake me at 4:30pm the following night. I had a massive headache and couldn't stand light. I also had a very low BP (76/48) and a mild temperature 37.7. The GP called an ambulance and I was taken to the local hospital. On arrival they did a CT Scan, a chest X-ray, some blood tests and an ECG. They also gave me some IV Antibiotics and as my blood sugar was 3.6 and I had had no fluids since Saturday they pushed some fluids (Saline) through my IV as well. After a couple of hours of fluids I began to feel more alert and my headache lessened. A Dr came to see me, he told me he was a rheumy specialist well he was very rude. He basically told me that as there was nothing wrong with me as my ESR was within normal range. (Bearing in mind at the time my eyelids were very puffy and I'd just slept for over 24 hours)

I was discharged at 2am and went home (in temps of -6 degrees in my PJ's and dressing gown thank god my hubby had a warm car) So I've been home for two days the headaches gone but I'm still tired. In fact from the last 60 hours I've slept for 49. Feeling a little at my wits end so any suggestions would be great.

01-17-2012, 06:54 PM
hi suzi, and welcome.

it appears that if some doctors see something that is completely outside of there understanding.....
they try to dismiss it.
the more specialised the doctor.... the worse the attitude.
luckely not all doctors have such an attitude.

my suggestion is to see your local gp, and get a referal to a different rhuematologist.

i know you have already been diagnosed,.....
but something is not normal and needs to be investigated.

01-17-2012, 07:10 PM
hi suzi welcome to whl i agree with steve some doctors have not clue you really need to see rhuemi and get the investigations and find out whats wrong.

01-18-2012, 06:33 AM
Many thanks. I have a rheumy but she's not brilliant. Last time I saw her she told me off for not having had a bone density scan. (How was I to know) she scheduled one which I had last Sept & I've still had no results...
I'm going to see my GP on Friday and insist on answers. Its not normal for me to need around 12 hrs of sleep a day & still be tired & how can my ESR always be normal even when I have visible swelling.

01-18-2012, 11:31 AM
I guess it's got to the point now where I've had enough. All I do Monday to Thursday is sleep and go to work, I have no energy to see my family or friends. And then on a Friday and Saturday I am recovering the resources I've used up and not recouped during the week and then by Sunday I may feel a little bit normal and my husband gets really cross with me. He just doesn't seem to understand quite how it feels to have the person you once were taken away from you...

01-18-2012, 03:53 PM
suzy it is hard sometimes for family to understand what this disease does to us and the fatigue that comes with it my daughter also has lupus and she sleeps for hours and hours on the site we have a posts which is called the spoon theory i have beenon here for 4 years but only recently read it this is something that will help you explain to your husband and other family and friends how you are feeling. i suggest you ask tgal or rob how to find this on site as my memory is bad just message them and they will tell you or someone else may know i am sure this will help it has helped my family to understand hugs kim

01-18-2012, 04:40 PM
Hi Suzy. First let me welcome you to WHL. I am sorry for all that you are going through. It is bad enough to feel bad but when we have bad doctors on top of that it makes it worse. Believe me, I know.

You are party of the WHL family now. We will be here for you.

01-19-2012, 11:12 AM
Got an appt to see GP tomorrow. Want answers to 2 main questions. 1. Why is my ESR 'normal' when I have visible inflammation? And 2. What can I do to get my energy back & where's it gone?

01-19-2012, 01:36 PM
Got an appt to see GP tomorrow. Want answers to 2 main questions. 1. Why is my ESR 'normal' when I have visible inflammation? And 2. What can I do to get my energy back & where's it gone?

Man if he can answer those I want to know where he/she is located because I have never found an answer to the "where has it gone"

01-20-2012, 04:14 AM
Well she couldn't answer either :( she suggested my ESR & CRP levels are being falsified/masked by the prednisilone & naproxen. I showed her a photo of my very swollen foot when my ESR for the same day was 4.
As for the tiredness she has suggested retesting my thyroid function levels as they haven't been done since June & this all started in July. I'm not convinced that's it as I've not had any significant weight gain. The first appt I could get for blood tests was next Friday so it will be at least 10 days before we know anything. The GP said if that's ok she has no idea & would need to consult my rheumy.

01-21-2012, 09:07 PM
Hi Suzy,
Welcome to WHL. We all understand what you are going through - it seems that rheumys are arrogant the world over.
It makes sense to me that the meds that you are taking would change the results of the tests. I've been told the same sort of things.
Like you, I was diagnosed with MCTD (Lupus, Sjogrens, RA, Psoriatic Arthritis, with Raynauds, Meniere's & Spasmodic Dysphonia thrown in).
I had a great rheumy in the state of Texas, who was treating me for those. We moved to California, and the new rheumy just doesn't agree because her blood tests show that everything is fine. DUH! Doesn't that mean that the meds are working?
Sometimes I wonder about the intelligence of these so-called specialists.
Good luck with getting some information.

01-22-2012, 12:03 PM
Yeah in the UK it's really frowned on if you try to change dr & youre made to feel bad.

01-22-2012, 04:40 PM
dear suzy if you are not happy with the treatment you are getting you have every right to look else where some doctors can be so full of themselves they do not want to accept they could be wrong. it is your body remember not there,s my blood tests results go up and down this can be because you are flaring or because medication is working says my rheumi i am lucky i found a good one but it took six months and going to a lot of arrogant ones before i found the right one. you do what it is best for you hugs kim

01-22-2012, 06:21 PM
I am glad to hear that your GP, at least, has enough common sense to know that your medication may be the reason for your "normal" test results (too many doctors refuse to acknowledge this fact). The fatigue that is part of auto-immune diseases, especially Lupus, can be a truly debilitating fatigue that affects our lives in many ways. Add to this the fact that you are still working, dealing with the stress of the job and illness...it is understandable that your fatigue may be more consuming than most. However, I strongly agree that this is something that must not be ignored and you may have to insist that your doctors continue to test you in order to find the underlying issue here.
One of the things that we have learned is that we must be our own health advocates and we must stand up to our doctors, not allow them to dismiss us, and insist that they take all appropriate actions to help restore us to some form of functional health. We are also here to help you as much as we can...I wish you the very best :-)

Peace and Blessings

01-28-2012, 11:07 AM
Many thanks all. I did have some interesting information from the lupus nurse at St Thomas' in London. She said that the standard for checking disease activity in Lupus is ANA not ESR as ESR can be affected to easily by other factors and also some peoples ESR never changes... So getting somewhere just slowly. It seems to be a week between each appointment at GP and blood tests etc.

It's my 40th this year and my friends keep asking if I'm having a party. Yet I haven't got the energy to organise anything and also if I'm honest the idea of staying up beyond 9pm any night isn't good at the moment