going round in circles

sheba2

Hi everyone old and new.

I haven't been on site for ages but thought I would take a look. I'm now nearly eight years into whatever I have and have spent the last year having every test known to man.

Eight years ago after experiencing terrible joint pain and extreme fatigue my gp 'thought' I might have fybromyalgia. Take some pain killers and see how you go I was told. Well two years on (I know I should have gone back sooner) I had moved house and was under a different gp and still really suffering. I had become virtually unable to do so much and the fatigue was dreadful. My new gp sent me for blood tests after telling me there was no such thing as fybromyalgia!!!!! The tests showed raised inflammatory markers and my new gp diagnosed polymyalgia rheumatica. I thought I'd been hit by a Harry potter spell. Anyway I was prescribed steroids and so began a three year period of meds and blood tests. After about two years I had reduced the steroids but in all honesty was still not feeling any better and if anything the amount of joints affected had increased plus I had now become very inactive as everything hurt such a lot. When I spoke to my gp he had the nerve to say 'who told you that you had polymyalgia' I wont repeat what I thought.

So a year ago he decided to send me to a consultant who promptly told me I should have seen him when this all started and that it would be very difficult to diagnose now. So began a year of scans and tests and more scans. I am currently waiting for the results of a radio isotope bone scan plus yet more blood tests. Throughout all this my inflammatory markers have remained on the high side but apparently not high enough to be full blown arthritis. So eight years on the consultant is again 'thnking' it might be fybromyalgia which is apparently better than having arthritis.

I am beginning to wonder if I will ever know what is wrong. Not having a medical diagnosis makes me feel that I'm somehow making this up. I keep reminding myself that the markers are raised and the pain and swelling I get is very real but when people ask me what is wrong and why I can't walk far or do much in the way of housework it sounds ridiculous to say 'well I might have fybromyalgia' then again I could have something else. Does anyone else on here have a similar problem it is really driving me mad.

Sorry for the rambling post

debatat

Hi Sheba

Sounds as though you have had a terrible time, it just shows how important a good doctor who really listens to us is.

I hope you get answers when you go back to your rheumy. Have you tried keeping a journal of your symptoms to see if you can indentify any triggers? I recently took photos of my worst joints to show my rheumy how bad it gets, for me that really paid off. Also get copies of your blood test results.

I'm new to this really so can't be of too much help I am afraid, but I am sure that someone more knowledgeable will be along shortly. I just wanted to tell you not to give up, you know your own body and know when something isn't right!!

Deb

petmad

Hi Sheba, I am so sorry you have had this experience. It is a shame that we are dependant on the beliefs of individual doctors to decide what is wrong with us and then for the specialist to state you should have been seen earlier. As if it is your fault!!
It is time that the governing bodies should dictate a little more and tell individual doctors that they cannot ignore conditions which have been recognised and treated. They are leaving too much power in the hands of misinformed individuals. In a hospital documentary the other night a consultant asked his student what is the difference between a doctor and God? answer...God does not think he is a doctor.
I hope things go much better for you soon. Linda

woodbon

Hi
I'm sorry you have had such rotten time. I do understand, a rheumy sent me to neurology, to be tested for myasthenia gravis, because I am tired a lot and had a little double vision, which has been sorted by the optitian,(I have always had bad eyesight), which I hadn't heard of before :!: I have OA in my spine and neck, hips, hands wrists, etc.

It is hard, I know waiting for test results and trying to explain to people. One way you could look at it is that they are at least trying to diagnose you and not sending you away or giving you the wrong treatment because they have'nt tested you enough! It must be very frustrating for you. I hope you soon have a straight answer to your problems and treatment to feel better. Sue

eckstardeluxe

Hi, I'm sorry you are having this trouble, why can't all doctors treat everyone the same. My GP has been great, he acted really quickly but I hear so many stories like this and it makes me so sad there are others not being afforded the same care. I'd keep at them and don't ever feel like your badgering them, you know your body better than them and sometimes you need to get tough with them to get the help you deserve. Hopefully you will have some good news to share soon. x

colinone

Hi i'm sorry your having these problems as if the illness wasent bad enough, you really have gone round in a circle. I hope things start to improve for you.
Take Care
Colin

elnafinn

Hi Sheba

I do remember you and am sorry that you are posting again with unhappy news.

Having no medical knowledge but just from reading other peeps posts and generally trying to familiarise myself with other diseases it does sound like fibro. Fibro does not involve the joints as does RA and OA and I think you say you have joint pain. Do you mean pain around the joints? With fibro the pain comes from the connective tissues, such as the muscles, tendons, and ligaments. Fibro patients describe their pain as aching all over and they feel like their muscles have been pulled or overworked.

There are some common similarities between fibro and chronic fatigue (ME).

I can well imagine that your present consultant says that after all this time it will be difficult for him to give you a diagnosis.

I expect you would say that you "hurt all over" and this is how Fibro patents describe how they feel.

I do hope that you and your consultant can work together amicably and he comes up with a diagnosis.

Take care,
Elna

mistywillow

sheba2 wrote:

Hi everyone old and new.

I haven't been on site for ages but thought I would take a look. I'm now nearly eight years into whatever I have and have spent the last year having every test known to man.

Eight years ago after experiencing terrible joint pain and extreme fatigue my gp 'thought' I might have fybromyalgia. Take some pain killers and see how you go I was told. Well two years on (I know I should have gone back sooner) I had moved house and was under a different gp and still really suffering. I had become virtually unable to do so much and the fatigue was dreadful. My new gp sent me for blood tests after telling me there was no such thing as fybromyalgia!!!!! The tests showed raised inflammatory markers and my new gp diagnosed polymyalgia rheumatica. I thought I'd been hit by a Harry potter spell. Anyway I was prescribed steroids and so began a three year period of meds and blood tests. After about two years I had reduced the steroids but in all honesty was still not feeling any better and if anything the amount of joints affected had increased plus I had now become very inactive as everything hurt such a lot. When I spoke to my gp he had the nerve to say 'who told you that you had polymyalgia' I wont repeat what I thought.

So a year ago he decided to send me to a consultant who promptly told me I should have seen him when this all started and that it would be very difficult to diagnose now. So began a year of scans and tests and more scans. I am currently waiting for the results of a radio isotope bone scan plus yet more blood tests. Throughout all this my inflammatory markers have remained on the high side but apparently not high enough to be full blown arthritis. So eight years on the consultant is again 'thnking' it might be fybromyalgia which is apparently better than having arthritis.

I am beginning to wonder if I will ever know what is wrong. Not having a medical diagnosis makes me feel that I'm somehow making this up. I keep reminding myself that the markers are raised and the pain and swelling I get is very real but when people ask me what is wrong and why I can't walk far or do much in the way of housework it sounds ridiculous to say 'well I might have fybromyalgia' then again I could have something else. Does anyone else on here have a similar problem it is really driving me mad.

Sorry for the rambling post

Hi Sheba
You sound like you are having a really tough time! Lots of rheumatic conditions do not present in a typical way and are often difficult to diagnose. Generally though i think you should stick with a rheumatologist and just use your Gp as back up. If you are going to get any conclusive answers then it is more likely to come from a specialist in the field. I know it would be nicer to have a name to give to your family etc but just tell them that you have an inflammatory condition that causes you tremendous pain and tiredness and the doctors a still trying to find out exactly what it is.
Take care Gill x

sheba2

Thanks to everyone for there thoughts. I must admit that I think the fybro diagnosis could be accurate. It is just difficult to think that you have an illness that some doctors don't even recognise. My consultant luckily isn't one of them. I do have aches and pains all over and I get lots of tender spots. The pain around my hips and shoulders is particularly bad at present and like many on here sleepless nights are a real pain in every sense of the word.

Also the fine weather although wonderful and a huge boost mentally seems to really affect the pain levels. Does anyone else suffer when the sun shines?

I think most of all I shall be happy when all the tests are over. Waiting for results has been horrendous especially when my ct scan showed a mass on my liver and ovarian cysts. Luckily further tests showed no problems but it was a very anxious time. I feel like my life has been on hold for the last year or so and a diagnosis would at least help me to accept things and move forward -even if I have to hobble.

ramummy

Poor you - I hope you get it all sorted out soon, the not knowing must be really tough.