Trouble with diagnosis

boothbabe

Hi

This is my first post so I hope someone can help me. I have been seeing a specialist for the last three years and was told I may have Fibromyalgia, the pain has been increasing on each visit and I am now struggling to do everyday tasks. Last week she told me that the only thing wrong with me was tennis elbow. As you can imagine I was very upset and am not sure where to go next. The pain is in all my joints and muscles not just my arms but the specialist did not seem interested and has now signed me off. I have had numerous blood tests which have all come back normal and wondered if anyone else has been throught this. Please help

frogmorton

Hi Babe

This is a tale we hear so much you knwo.

Lots of us have spent years getting diagnosed.

If your GP is helpful I would go back there and ask for a second opinion if you can and maybe referral to a pain clinic so you can get the pain under control.

Do not feel a fraud or that you are making it up. Unfortunately you will have to be persisitent if you are going to get sorted and you should if you can take someone else with you to your appointments for support. They find it less easy to fob you off if you are not alone

All the best and dont give up

Love

Toni xx

dippydoodah

I agree about going back to your GP and if you can, take someone with you who can ask any questions if you feel you are not able to. It's comforting to know theres someone there to support you.

If you are experiencing so many pains, there has to be a reason for it and I would ask for a second opinion.

Sorry I cant be more help, Im kinda new to all this myself but I really do hope you find the answers you need.

Caroline x

woodbon

Hello,
I'm so sorry, I'd go back to your GP, as suggested. If you have pain their is a reason for it, whatever help you need should be offered. I'm in the middle of being diagnosed and the various specialists I see seem to come up with different things!

You need to have help though, have you tried talking to the helpline team, number at the top of this page. They are very good and may think of an approach that you hav'nt. Just keep on going back to the doctor until you feel satisfied!

Love Sue

elnafinn

Hi there

Perhaps you could get a referral via your gp to a pain clinic. They have helped many people on here, including myself.

I am surprised the consultant dismissed you when you are in pain, he should have been able to provide alternative suggestions as to where to go for help.

Luv
Elna x

dollydaydream

boothbabe wrote:

Hi

This is my first post so I hope someone can help me. I have been seeing a specialist for the last three years and was told I may have Fibromyalgia, the pain has been increasing on each visit and I am now struggling to do everyday tasks. Last week she told me that the only thing wrong with me was tennis elbow. As you can imagine I was very upset and am not sure where to go next. The pain is in all my joints and muscles not just my arms but the specialist did not seem interested and has now signed me off. I have had numerous blood tests which have all come back normal and wondered if anyone else has been throught this. Please help

Hi babe
It's a horrible situation & I'm so sorry you are going through this at the moment.
Fibro is often diagnosed with a proccess of elimination as there is no actual test for it. I suffered pain everywhere and it changed daily. My GP thought it was a type of arthritis & gave me anti-inflamatry tabs which did no good. When I saw on the internet all the symptoms that I had & the cause was something called Fibromyalgia I actually cried. At last there was a name for what I was suffering from.
Since then I have been diagnosed with OA & RA & fibromyalgia so I never quite know which is causing what pain. I now have a very understanding Rheumatologist and my hospital has a telephone helpline operating during the week.
I would go back to your GP and tell him how awfull you feel & ask how best he can help you. My Rheumy told me that blood tests often do not show up Rheumatoid arthritis so they have to look at what the patient presents, like swollen joints, pain etc.
People are becoming more aware of fybro now but I still come across friends who have never heard of it.
I hope things work out for you, keep at them till you get some answers.

love Dolly :shock:

boothbabe

Thank to everyone who has replied I feel a little better I have made a further appointment to see my GP and will mention the pain clinic to him

Thanks again will post with further updates at the end of the month when I have seen my GP

naseebapnaapna

hi boothbabe,

have you had a referal to the rhumatologist?

they are ones who do the proceses of elimination, adn also tenderpoints tests to determine fibro or others.

pls ask your gp to refer you to rhuemy if s/he is not able to daignose or rule out fibro.

the pain clinic will help to deal with the pains, but you will need to know whether you are having your symptoms helped or a condition dealt with.

good luck.

and welcome to the boards

sangita

boothbabe

Hi
Yes I have they told me I had tennis elbow and she just did not seem interested in me at all seen her about 6 times and every time just given the brush off. Told I need new desk at work so got one and new chair had them checked and they are fine but she kept saying this is the problem and need to get expert in at work. I have since reduced my hours at work but the problem is still getting worse so going back to GP to see if they can do anything.

dorcas

frogmorton wrote:

Hi Babe

This is a tale we hear so much you knwo.

Lots of us have spent years getting diagnosed.

If your GP is helpful I would go back there and ask for a second opinion if you can and maybe referral to a pain clinic so you can get the pain under control.

Do not feel a fraud or that you are making it up. Unfortunately you will have to be persisitent if you are going to get sorted and you should if you can take someone else with you to your appointments for support. They find it less easy to fob you off if you are not alone


All the best and dont give up

Love

Toni xx

I agree with everything Toni and others have said! Many of the sero negative arthritis don't show up in blood tests and it can take a long time to get a proper diagnosis.
Bottom line is if you are having that amount of pain and discomfort then you are right to question what has been said and need to have it investigated further, so don't give up!

Ask to be re referred, to a different consultant if necessary. Irisx

joyful164

Hello Boothbabe

I'm sorry you that been in such pain. When you feel that you are not getting the proper attention, it doesn't help. When you say specialist, is that a rheumatologis? If it is, why hasn't she/he arranged for you to have a cortisteroid (Not sure I have spelt it right) into the elbow, which should help.

Like others have suggested, you need to go back and insist that you go to the Pain Clinic to discuss your treatment. It could be a trapped nerve even I had problems like you describe when I was in my thirties (now 65) and more recently have had more problems with OA, which as responded to Chiropractor sessions.

I really do hope you can get some help soon. It sounds like you need to give the elbow some rest, so don't know if you are able to do this, go and see your GP and get note for awhile. Perhaps he could refer you to the Occupational Health dept.

Good Luck

Joy

boothbabe

Hi
Yes the specialist was a rheumatologis, I think because I did not say how much pain I was in and mainly complained about my arms as they are they were the things I used the most the only pain she looked at was in my arms and dismissed the pain I had in the rest of my body.

I also have pains in my ankles, knees, hips, back, elbows, shoulders, neck and wrists. These were not as bad as my arms but now seem to have caught up. She put pressure on these areas with her fingers and I nearly jumped out of my seat with the pain but she said it was not that bad as I hid my reaction, that's the way I was brought up to work through the pain and just get on with it so I am so use to hiding the pain I just cant help it.

I have got to the point now that I cannot stand it any longer and do not want to keep popping the pain killers all the time so I am taking my husband with me to my next appointment to back me up on how much I am struggling now with pain as you have suggested.

thanks for your help it does make me feel a lot better about the situation.

skezier

Hi Babe,

I think thats a good plan to take your husband with. Its sometimes like you have to keep charging at the same brick wall over and over again. Its not fair and I wonder is there some other Rumo you can see? I really hope it gets easier for you but take the pain killers cus pain makes everything seem worse. I rally hope they will sort you soon. Hang in there flower, Cris x

page35

Hi Boothbabe
was just wondering if you had the CCP blood test?
you said you had a lot of tests but this one is quite new, maybe you could ask your doctor about it when you go.
anyway whatever your tests say you know something is wrong and you need help so i wish you good luck at your GPs and keep going back until you get help.
best wishes

frogmorton

HI Babe

Good idea - take him with you and all being well they will listen I beleive we are more powerful that way - after all there is often more than one of them!!

Good luck

Love

Toni xx

boothbabe

Thank you for all your posts I am going to see my GP tonight and will mention to him the CCP test to see if I have had it

Will update you tomorrow

cutieclaire

Hi Boothbabe,

I was wondering how you got on??? I have had a few problems with diagnosis as I have nothing in my blood tests either. Work is putting pressure on too and even though people on her say about don;t let it make u feel like a fraud it kind of puts doubts in our heads, which is understandable.

Hope you are well though. They put me on steriods and said if they work then it is IA, which is promising as the hands, wrists, elbows, knees and feet are no longer in pain, there is still a little pain in shoulders and lower back but I think all these joints have been covering up the real pain I have had in other places. I didnt even think my back pain was that painful until the other joints stopped hurting and its been really horrible. So I really know how u must be feeling.
I really hope they find someone to listen and to help you be free from the horrible pain for a while.

Take care and keep us posted

Claire
xxxxxxxxxxx

boothbabe wrote:

Thank you for all your posts I am going to see my GP tonight and will mention to him the CCP test to see if I have had it

Will update you tomorrow

boothbabe

Hi

Went to see my GP he was brilliant he told me he felt that the first Rheumatologist had fobbed me off and after reading her notes had seen that she thinks I showing signs of Fibromyalgia (the points pain test was inconclusive, I hid the pain from her as I said which is not the best thing to do) and that a course of physiotherapy will help with my posture which is bad due to the pain (wish she had said this on my last appointment).
CCP was mentioned felt that this should be the decision of the Rheumatologist he is to refer me to for a second opinion.

My GP said he was not an expert but felt that my symptoms are significantly worse than the last time I saw him and feels that a second opinion is needed just to get a diagnosis, which I think is half the trouble that I have no idea why I feel like this. He did warn me that Fibromyalgia is a condition that cannot be cured and that it is something I will have to live with but felt that just knowing what I was suffering from would help with the depression (started to cry at this point as I felt he was really listening to me). He also mentioned that Irritable Bowel is also associated with the condition which I have been suffering with for the last 20 years.

Will update on the physiotherapy if this helps and when I next see the Rheumatologist which could be some time.

So do not give up if you feel you are not getting the best from your GP try another at the practice mabe

skezier

Hi Babe,

Really glad you saw a decent gp ad he is sending you for a second opinion. It can't be cured but it can be helped so hang in there for bit and hopefully you will find they help you soon. Well done for running with it and leaving you a ((( ))) and a hope you don't have to wait too long. Cris x

woodbon

Hello, Its good to see that you have a sympathetic GP, it makes such a difference, mine is great too. I have been going to the doctor and off work for the last year and have had the back and joint pain for about 3 years, though it started slowly so its hard to say when I first noticed it as a problem, and I am still having tests! Thats the trouble with our condition, often it can be hard to pin down and then some doctors are so much better than others. The first Rheummy I saw just said Wear & Tear and carpel tunnel, and sent me of for surgery, which has helped that, but it wasn't the only problem.

I hope you see a good specialist and get a diagnosis. If it is Fibromylgia, then at least you can start the pain relief and physio. Or something else and you may need drugs to help.

Good luck! Love Sue

frogmorton

Hi Bab

So very pleased that you now seem to be getting somewhere. Well done for being persistent and thank you for remembering to let us know how you got on.

I wish you luck with the new referral and the physio too. My MIL has fibro as do a fair few on here - there will be loads of support for you if it IS that.

Take care and well done

LOve

Toni xx

kerrycc

I agree with the CCP test. I was tested for RA for 6 years with no diagnosis. I eventually resigned myself to the fact that they would never find out what was wrong with me - until 18 months ago. I got a further referral to RA clinic after discharging myself years ago, my RA tests showed that I was absolutly fine, but the CCP test was sky high and proved that I had RA and looking back, must have had it for years!! How frustrating! Defo ask them if they have done that one xx

cutieclaire

I am so glad you had a better experience than before and I am glad its been looked into a lot more.

Hope all goes well and hope you start to feel a little better soon,

Love Claire
xxxxx

boothbabe

Thank you to every one for their kind words and their help in making me try again with my GP. As you say you feel ten times better just to have some say they are with you in trying to find out what is wrong and that you are not just wasting their time.

Love Nikki

airwave

Hi,
It is a shame that we are made to feel like one of those balls in the early tennis games on the computer, just getting bounced back and forth between GP and Consultants, dr's and hospitals, I think I own a parking space there now!

Anyhow, have a pleasant w/e, beware the chocolate bunnies! Perhaps we ought to prescribe it for ourselves.......... one large portion X 10 times a day


8) It's a grin, honest!

livinglegend

boothbabe wrote:

She put pressure on these areas with her fingers and I nearly jumped out of my seat with the pain but she said it was not that bad as I hid my reaction.

That was most likely why she didn't pay much attention to the rest of your problems. Doctors can't see or measure pain and if you hide how much pain you are in then they won't know about it.

When you see your own GP and also get a second opinion, don't be so brave, (I used to be just the same), and tell them how much it hurts and don't take any painkillers before your appointment. A loud "Owwwwww that hurts!" is a good guide as to the level of pain that you probably feel.

Joseph 8)