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The UKFibromyalgia Forums • View topic - I feel I am ignored!



I feel I am ignored!

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I feel I am ignored!

Postby Chappy » Mon Mar 28, 2016 8:00 pm

I am a 56 year old male. I have no diagnosis of FM. 8 years ago I had a diagnosis of osteoarthritis in my right shoulder. Since then I seem to have had constant problems with all my joints. The pain varies from day to day. I never seem to sleep well and at times think whats the point as I often feel more tired than when I went to bed.

I have had numerous blood tests to elimimate RA, Gout, Lupus etc etc etc none of which was postive. I must have had 20 Xrays, varoius scans, MRIs etc all of which came back negetive!

My joints never swell or go red but at times a simple touch can be agony. I did an online test for FM and ticked 80% of the boxes for FM. Lol....It advised me to go to my Doctor.

I do not want a diagnosis of FM but at least I can give an answer to the people who ask "whats Wrong?" Instead of living in this horrible void where you are made to feel a charlatan.

Anyone been in the same situation?
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Re: I feel I am ignored!

Postby Claire'scomfycorner » Tue Mar 29, 2016 11:37 am

Hi Chappy

Have you asked your GP to refer you to a rheumatologist? They are the ones who diagnose fibromyalgia.

Claire
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Re: I feel I am ignored!

Postby Chappy » Tue Mar 29, 2016 1:32 pm

Hi Claire, thankyou for your kind reply. My basic problem is that I have been treated for a frozen shoulder( left & right), I damaged my lower back (compressed discs) whilst in the forces, I have been treated for both tenis and golfers elbow,also I have developed a bakers cyst behind my right knee. I have been reviewed by an orthopaedic surgeon who is at a loss to explain the problems I am having.

My Gp puts it down to osteoarthritis which I could except if there was any evidence of osteoarthritis in the xrays or MRIs etc. But that does not explain my other problems i.e sore thoats, feeling cold, feeling dippy at times as well as anxious etc.

I have tried to explain to various GPs that my problems relate to all my joints, as we
Ll as other physical/psychological symptoms. The answer I seem to get is "whats the main problem?as I can only deal with one problem per consultantion"! And you only get ten minutes? The other problem is that in Leicestershire trying to get a rheumatologist referal is almost impossable! My wife as Psa and she as numerous problems getting follow up appointments.

I plan to see my GP again this week. I plan to take my wife as she knows my problems. But I do not hold out much hope!
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Re: I feel I am ignored!

Postby Claire'scomfycorner » Tue Mar 29, 2016 1:51 pm

It sounds like you have been through a lot! Have you mentioned fibromyalgia and asked them to look at that as a possible diagnosis?

Claire
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Re: I feel I am ignored!

Postby Chappy » Tue Mar 29, 2016 2:13 pm

No not directley, I am an ex Nurse(RGN) but trained before FM became a recognised problem. It is not an area that I was very knowledgeable in and pethaps lack the confidence to challenge a GP directly. But I think now is the time to ask them to prove its not.

I think the way forward is to perhaps write them a letter first listing my symptions and concerns. At times I have real problems putting my thoughts logically and clearly. This may enable me to explain in detail the problems in the ten minutes allowed.

Just talking as helped
Thankyou
Allan
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Re: I feel I am ignored!

Postby Claire'scomfycorner » Tue Mar 29, 2016 2:19 pm

I know what you mean about getting your ideas down on paper, it's a good idea. Let us know how you get on :)

Claire
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Re: I feel I am ignored!

Postby FluppyPuffy » Tue Mar 29, 2016 7:39 pm

:welcome: to our little escape from it all Chappy :cow-wave: :cow-wave:

Sorry to hear what you're experiencing at the moment, being in LimboLand is no fun at all xx

Writing things down can be very helpful as you can leave a copy with your GP to go thru, as well as use them for reminding yourself which points you want to get across when talking. The 10 min appt and only being able to discuss one thing during your appt are the norm unfortunately, and a condition like FM just loves to be anything at all that doesn't fit in with the norm. When I have a GP appt, I find that putting my various issues into an order based on intensity can be helpful, and can often lead to links being made with other things affecting me, meaning that in a rather odd way, I do get to go over more than my allotted one xx

I would try and push for an appt with a rheumy if you can. Even if it means you have to go with a possible link to your OA, at leastit means that you are able to be seen, and can use the appt to bring up the various things that have been getting to you recently xx


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Re: I feel I am ignored!

Postby Chappy » Tue Mar 29, 2016 8:01 pm

Hi thanks for the advice, I have had problems for at least the last 8 years but its only over the last 18 months that the pain at times as been severe. The pain is like a backgroud noise most of the time. Its there but I can cope. I am on max dose codiene phosphate which helps but at times nothing I take or do makes any difference. As a young man I broke my leg and the pain is worse than that!
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Re: I feel I am ignored!

Postby Chappy » Thu Mar 31, 2016 12:32 pm

:-D The appointment with my GP went very well, my letter seemed to work and she agreed to refer me to a rheumatologist if my blood
Tests come back negative. As my blood tests have always been within normal ranges then I think the referal is a done deal!!!! :-D
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Re: I feel I am ignored!

Postby Claire'scomfycorner » Thu Mar 31, 2016 5:44 pm

That's great news :-D Thanks for letting us know!

Have a great evening.
Claire
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Re: I feel I am ignored!

Postby Chappy » Fri Apr 15, 2016 5:55 pm

Blood tests all normal, just received my Rheumatology Appointment for 6th June.
A bit of a wait but at least I am going forward.

Will let you know how I get onx
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Re: I feel I am ignored!

Postby Chappy » Fri Jul 01, 2016 9:15 am

Seen by Rheumatologists. Bit of a mixed picture I have a number of symptoms of Fibromyalgia 14 out of 18 tender points etc and the consultant is leaning towards that diagnosis. However he agrees that my osteoarthritis and Fibromyalgia explains some but not all of my symptoms.

He also believes that I may have another condition on top. Which one he does not know!He is querying some form of inflammatory arthritis. He tells me that there are exceptions when making a diagnosis and I may be that exception. So he is not ruling out Psa.or something similar.

On examination he said my neck is not functioning as it should, so I am awaiting various investigations for that and I am having a series of repeated blood tests over the next six months.

So I may or may not have Fibromyalgia and may have something else on top of something I may not have lol.
But Hay Ho at least I am getting some very definative tests and people are listening to me. I will keep you informed. :-D
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Re: I feel I am ignored!

Postby LindyM66 » Sat Jul 02, 2016 7:40 am

Hi Chappy,

Good news that there's progress, rather than being stuck in no mans land.
Took me a long time also, for some constructive steps. In the end, my rheumatology referral happened after 2 trips to A & E.
GP was more concerned about me going to A & E than how I felt, and was quite snippy. However, my background is nursing also, so I was more than able to bring her down a few notches. Terrible when they realise your professional background, their attitude changes.

Hope you continue to move forwards, Chappy

Much Love
Lindy
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Re: I feel I am ignored!

Postby Chappy » Sat Jul 02, 2016 8:56 am

Thanks Lindym66,

The Rheumatology situation in my area is a very mixed picture. My follow up appointment is on a waiting list! My wife who as Psa and Fibro is in the same situation. She is on two types of DMARDs and her consultant said I will see you in three months that was seven months ago!

The consultants differ on their attitude towards Fibro! My wifes friend sees a different consultant was reduced to tears by his attitude towards Fibro.

Perhaps matters will improve but I am not holding my breath
xx
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