Hello,

IF ANYONE IS EXPERIENCING WITH THE SAME PROBLEM I WOULD LIKE TO HEAR FROM YOU as it's good to chat to other people with similar problems.

I am 33y/o & married. Last year 2002 June/July I got a sharp pain in my right shoulder, which then went to my left shoulder then developed in my left & right elbows then all my other joints. I become very fatigue have lost weight, am irritable, I have to lay down for a while. My worst area now is in my fingers which I am unable to do hardly anything due to the pain & inflammation.
I saw my local Dr.which he put me on anti inflammatory tablets, celebrex, naprosyn, voltaren, just to name a few, they helped for a short term then started to irritate my stomach, & have no affect. I stopped taking them. My Dr. then sent me to have blood tests done for ANA, ENA, RF,& ESR they all came back negative. Dr told me I have Seronegative Arthritis.

Then I was sent to see a Rheumatologist January this year 2002 he checked me over thoughly & told me I have no evidence of arthritis. And just told me to take Panadeine for the pain.

My local GP was not sure what to do next as everything possible had been done, he was not listening to me properly when I was telling him I had developed more symptoms. (I think he was just waiting to retire as he did not care).

I saw another GP for a second opinion no help at all she looked over all my reports & blood tests & told me it might be something which I have to just learn to put up with (it's alright for her to say that she is not the one with the pain 24/7.) I did not go back.

I went back to my Dr. at least he never said that to me. July 2003 my Dr. decided to put me onto Prednisone 5mg twice a day, they were helping with the pain (what a relief it was). Then he retired which I did not know, found that out when I rang to make an appointment as I was nearly out of tablets.

September, Here I go again searching for another local GP. Found 1 he is nice he listened & took an interest in what I was saying.

*First he suggested that I go off Prednisone because of the harmful affects it can have on my body, so he weaned me off them as well as putting me on Plaquenil to see how I go. WOW was I going through a a rough patch felt like I was having withdrawal symptoms worse pain than ever CHRONIC That was just for 3 weeks went back Friday Sept 26. NOT THE BEST OF NEWS I RECEIVED. DOCTOR HAS TAKEN ME OFF THE MEDICATION ALL TOGETHER NOW. & said to have an X-ray on my Left & Right hands as they are the worst & re-do the blood tests again. As I have only seen him 3 times now since he has seen no evidence of my fingers been inflammed he can't do really anything for me he stated "its just my word that I'm in pain & have inflammed fingers" it happens everytime I use my hands that my fingers become inflammed. I felt embarrassed & humiliated & told me I don't have Arthritis.

I have had the x-rays, blood tests will be done on Tuesday 30th September. Dr. suggested I may need a review with my Rheumatologist (I don't see what he can do if the tests show up negative again).

It will be interesting when I go back for the results.

I have had newer symptoms now sore throat & tired, being out in the sun I seem to have a flare up makes me tired & fingers become inflammed & sore.

Sorry this has been so so long winded as I thought I would post all the details in full now from beginning till now.

I don't know what to do!

I'm so fatigue all the time now even my feet ache constantly all the time. I don't know how I'm going to cope when I have to work 2 days a week.

I try to keep my chin up but it's hard without taking any medication.

Regards
Petite_Sharon

It appears that this might be a good doctor if he would just explain a few more things. I have a pinched nerve in my shoulder which caused tremendous pain on that side of my body down to the fingers. I am very fortunate with my insurance in that I don't have to pay out of pocket for tests. Not getting enough sleep from the pain, etc. is enough to set off fibromyalgia and fatigue. It's really a bear when all the tests turn up normal. I got hepatitis C from a blood transfusion in 1967. I was not tested specifically for the Hep C until this summer. Tests for this were not available until 1992. ALL of my tests over the years have always been normal. Many auto immune diseases present this way in their early stages. I think both the patient and doctor would benefit from imparting a bit more information. Even though my problem has only been treated with physical therapy on and off for the past two years, it has been good to rule out more serious stuff and have some idea where the pain was coming from.
Yes, pain is invisible. That's is one of the major reasons it is difficult to get proper treatment. I would guess your new doc wants to start you over from the beginning so he can evaluate how treatments and meds affect you. In my early days of starting pain meds it seemed that not much of anything worked, so the doc would of course try something different. I have pretty much come to the conclusion that the pill that helped was the one I happened to be taking when the flare let up. Prednisone is one of those medications you don't want to be on long term unless absolutely necessary as in the case of a few chronic illnesses. The long term side effects are usually not worth it in most cases in the long run.

Indeed it is very frustrating to have to wait around so long for tests to be scheduled, doctor appointment, etc. That is when one needs lots of support wherever they can get it. Glad you are here. Just being able to vent your frustrations openly is normally a great help.

Alice

Hi Alice,

How are you today?

Thank you for your reply. It is good to chat to other people with the similar problems.

It always helps to talk to people that understand what you are going through as people that don't have the problem just don't realize what it's like since you may look well but your not on the inside.

Take Care

Sharon

hi, i am sorry you are feeling this way. my brother was diagnosed with fibro, but we have come to realize there are so many other things that can be wrong with him and doctors just don't want to bother to find what! so keep going to those doctors and more than one is fine. my brother is corrently seeing three. i feel like he is getting somewhere. it has been so many years since he has felt like a normal person. if you haven't already, look on the web and try to self diagnois. you would be amazed at what tests doctors forget about or don't want to bother with, but if you suggest certain things you help them help you. the guillain barre syndrome might be one to cheak out. hang in there and do not give up!!!! Jen

Hi Jen,

How are you today?

Thank you for your reply & feedback much appreciate it.
I won't give up.

Sorry to hear about your brother.

Take Care
Sharon