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Hi Everyone,

My name is Claire and I am 25 years old. I have been feeling poorly since I was about 19 - as with most of you I too have had a rollercoaster ride in trying to find a doctor who believes me and also get a firm diagnosis.

I have all the typical symptions inc joint pain especially hips and knees, chronic fatigue, sensitive to the sun, constant colds, unexplained rashes and hives and so on. Most of time feeling like a hypochondriac as there are so many things wrong with me.

It looks as though I was finally diagnosed yesterday with Fibromyalgia however need to go back and see my specialist next month to confirm the results of the blood I had done yesterday - My ESR has been really high the last few tests (last was 63) and I have also had protein in my urine, low white blood count although they change so much each time I have them. I also have "wear and tear" on my hip. I am under neuro at the moment however believe I should really be under a rumatologist. The Fibro forums tell me that ESR is not a part of fibro and possibly something called seronegative Lupus - I can't really find much on this??

I have been given Amitriptyline however am really sceptical about taking them as they are anti-depressants (It's the whole mind over matter thing -I'm not depressed so don't want to take these). My specialist assured me that they are not used for that and are only used to relive pain and aid sleep however my mum (who has arthritis) took them and she felt worse for it so I am abit in limbo at the moment and any advice would be appreciated.

Now, I just have to try and get on as best as I can, I have job which I really enjoy (and luckily they are sympatheic aswell) and a boyfriend who deserves a medal for putting up with me!

I'm glad that I found this site - it's nice to talk to people who know what you are going through.

Claire x
 

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A high sed rate is not found in fibro, but unfortunately it is possible to have fibro and something else. With protein in your urine, and low white blood cell count, as well as all your symptoms lupus really does sound like a possibility. There are other possibilities too, so hopefully your rheumy did a lot of testing and will sort it all out.

The amitriptyline was originally developed as an antidepressant, but it really didn't work so well but they found a number of other better uses for it including treating nerve pain, fibro pain, and enabling people to get more sleep especially of the higher quality that is often nearly absent in people with fibro. I don't think it is even prescribed at all anymore for antidepressant properties so no one would even "think" you are taking it for depression if you are concerned about that.

Sero-negative lupus means that no antibodies have been found in blood testing, but it is still clear that you have lupus by meeting other diagnostic criterions. For instance, through diagnosis of kidney problems (usually through biopsy). I encourage you to keep on top of this rheumy and be sure that follow up testing is done routinely, especially with respect to your urinalysis results.
 

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Amitriptylline is an interesting drug as it works in two quite distinct ways, depending on what dose is given. In low doses (10 mg to 75 mg a day) it is very effective with nerve type pains. Doesn't always totally get rid of them, but is a well documented drug for acting on the right parts of the brain to dramatically dampen down neuropathic pain. In higher doses (75 to 150 mg a day) it is an antidepressant. Interestingly, doses above 75 mg don't have any better effect on nerve pain, and doses of less than 75 mg seldom have an antidepressant effect. So, if you have been offered amitriptylline as a pain management tool, then I'd say give it a try - just make sure that you really do start on a low dose, and only slowly build it up to no more than 75 mg. You may get adequate relief on as little as 25 mg a day (usually taken at night).
 

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amitriptalin

I haven't offically been diagnosed with Lupus either, but I have been taking Amitriptalyn for two years to prevent my horrible migraines, it was the only thing that works, and it is also helpful with nerve pain and sleep, I would reccommend giving it a try!
 

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It can take a while for your bloods to show positive for Lupus, so the fact you are seronegative now doesn't mean you always will be.
The high ESR and the kidney symptoms would certainly warrant further investigation.
Many of us here have Fibro as well as Lupus. Sometimes Docs. diagnose Fibro then lose interest in you. It has been called a "waste basket diagnosis" for that reason. Don't let it happen to you.
x Lola
 

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Discussion Starter #6
Thanks for all your advice - it's comforting to know that there are so many people who suffer from this.

I did attend the London Lupus Centre back in August 2007 and saw one of the rhumetologists. He basically said that I had CFS and £750 later that was that. I now realise that I probably should have done my homework abit more and seen Dr Cruz.

I have to wait another month before seeing the neurologist again re: the fibro and am really inclined to just cough up again to see Dr Cruz privately although am nervous that he will just say the same thing as my bloods always come back negative for Lupus despite my ESR being consistently high. I am in alot of pain today and really can't take much more.

Have any of you had this problem? Would you reccommend that I wait for Neuro or take my chances and see Dr Cruz? I have read so many times that he is the man to see. Also, is it common be diagnosed with seronegative Lupus? Would they give me medication for that? Sorry for all the questions...

Claire xx
 

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Hello Claire,

I am surprised you did not get on better at London Lupus. Dr. D'Cruz is indeed a good person to see. I have seen him for years, my Daughter also sees him.
I was definitely being treated before my bloods became positive. Dr. D'C. will often diagnose a "lupus like" illness as a basis for starting treatment.
He is very fair and will not put you through expensive tests if they are not needed.
x Lola
 

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I have booked an appointment with Dr Cruz for the end of July (earliest appointment I could get).

I really hope this will give me some kind of closure. I know I'll probably always be ill but the not knowing really does make it worse some times.

Thanks for all your advice and I will let you know how I get on.

C xx
 
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