So Angry at Rheumy Letter

claircoult

Hi!

I hope you don't mind me having a bit of a rant. I just got a letter from my rheumy that has made me so cross and upset. I just don't know what to do.

I've been ill for over 20 years, originally diagnosed with ME because they couldn't find out what was wrong, 2 years ago diagnosed with Reactive Arthritis and 10 months ago diagnosed with Palindromic Rheumatism.

I haven't been very happy with the Rheumy I see in Rotherham, she doesn't listen to me, puts every symptom I have down to "chronic fatigue" and she doesn't seem the slightest bit interested in helping me.

I have seen her twice. She disagreed with the PR diagnosis and said I might have Reactive Arthritis but she wanted to pinpoint the bacteria that is causing flares. She didn't listen to me when I said flares seem to happen after all kinds of things such as viruses and stress, she just put me on hydroxychloroquine and said to come back when I had another flare. I did but the registrar failed to see the swelling (it's not in my joints is around my joints) and he basically thought it was either muscular or all in my head.

Today I got a letter from the rheumy saying that my blood tests showed no sign of infection or inflammation and that I need to stop the hydroxychloroquine. She asked me to reconsider a referral to the pain clinic (a suggestion she never made) and that she will see me in 5 months time.

I'm so upset. At the moment I'm in quite a lot of pain, I sprained my ankle a few weeks by simply walking on it indoors, I've had a low grade fever on and off for the past 4 weeks and I feel absolutely dreadful. The last time I saw the rheumy she refused to examine me when I said I wanted to show her the swelling I had and she said she would keep testing until she found the bacteria causing the flares.

I don't want to go to the pain clinic, I have my own ways of coping with the pain, I just want to try and find out what is causing the pain and do something about it. All the rheumy wanted to do was put me on tramadol and gabapentin but I've had bad reactions to those in the past and I can't function on gabapentin and I get physical withdrawal symptoms when I stop taking tramadol.

I don't know what to do. I feel like I'm back to square one. Is it too much to ask for a doctor who listens to me?

mig

Dont know what to say that might help as i was only diagnosed last sept and still getting my head round it all,but am thinking of you.Mig

elnafinn

No wonder you are angry and upset. I have not got any bright ideas as to what you could do, except to reply to her letter pointing out some of the things you have just told us.

I am not quite sure why you do not wish to attend a pain clinic especially if you have never attend one of these. I know they offer drugs but they may offer injections or something else. I am forever grateful to a lovely doc at the pain clinic who, with injections, got rid of my sciatica that I had suffered with for about a year (touch wood). I will have been painfree from that for 3 years at the end of this year.

I do hope you find someone in the medical profession to help you.

Elna x

claircoult

I have attended a pain clinic at a different hospital, many years ago when they thought I had ME. It was a very, very bad experience.

Basically I was told that there was nothing wrong with me and that I was just unfit. They said I had to do physio to get fit again because didn't I want to be well and have a life? If I didn't do the physio then I obviously wanted to stay sick, so even though I knew it would make me worse I had no choice but to do it.

I did physio for 5 weeks. I couldn't manage all the exercises and gradually got worse after each session until I was so weak and in so much pain I could no longer care for myself. When I returned to the pain clinic the doctor just said "I'm surprised you lasted that long" and referred me to the nurse for accupuncture, which is what I had asked about in the first place.

The accupuncture helped quite a lot, they taught my husband how to do the treatment at home but we stopped doing it after a while because I learned it was better to prevent the pain by pacing myself than to treat it after I'd done too much.

I've lived with this pain for over 20 years. I have various things I do to cope with it and I manage pretty well considering, I'd just rather not have it in the first place so I would like to see a doctor who can figure out what is wrong and try and treat it or at least help me manage it. I'm not sure what a pain clinic could do that I don't already do myself.

BTW the letter was the first time the rheumy mentioned the pain clinic so I don't know how she wanted me to recosider something we'd never spoken about!

elnafinn

If it was me, and I was so angry and upset at receiving the letter I would write one to her and at the end say something that implies you wish to receive a reply.

Elna x

liesa

you have my sympathies xx

I was diagnosed with palindromic rhuematism almost 26 years ago... i was put on one type of drug (pencillimine) for 5 years, when i stopped there was no change there are some Drs i have seen that have said it was RA and another would say just because of the knee replacement that it was OA, i have been told i have polyarthritis (more then 5 joints)
its so frustrating to be made to feel its in your head as this happened to me last trip to the hospital, i had a bone scan last september and it showed i had early degenerative arthritis in both hips, didnt say anything about my other joints he just kept repeating (he knew i was awaiting to go on the list for a gastric bypass in london) he just said over and over again 'you will benefit from a GB, i said to him 'so you think its all in my head then?' he didnt answer but just repeated....
to be honest i have no idea what is wrong with me but i know its getting me really depressed, i have often thought maybe it is in my head..... but when the pain is hitting me so hard i cant and wont believe its on my head!!
and neither is it in YOURS Claircoult... dont give up!!

valval

can you not ask doc to send you for second opinion you might get further with different doc good luck do not right pain clinic off some people have had positive appointments with them good luck val

barbara12

This is disgraceful, I honestly think this is the easy option for the GPs, its the same has when they put everything you have down to having arthur.
You fight your corner, and I really do wish you well.

claircoult

Thank you for your replies.

I feel like I've been on this merry-go-round way too long. I think I am going to write the the rheumy and complain about her as well. I don't think she ever took me seriously and just went through the motions to prove in her mind that there is nothing wrong with me.

I would go for a second opinion except I'm running out of people to see! Chesterfield wouldn't treat me, Nottingham wouldn't even see me, Norwich diagnosed me with Palindromic Rheumatism but it wasn't practical to treat me and Rotherham don't listen to a word I say.

I don't want to wait months for another referral only to go through the same thing yet again. I've been ill for over half my life, the still don't know what is wrong with me. What am I supposed to do?

weejean

Hi Claircoult

Just wanted to show my support. It is so frustrating when doctors make you feel as if you are unimportant and say that they suggested things when they didnt. I would definately write a letter of complaint as you have the right to say that you are not satisfied with the way you are being treated. Do you have a good GP who would listen to what you have to say and possibly try to help you in some way?

rugbygirl

Hiya Claircoult

I am just popping to wish you all the best with finding out what is wrong and getting the answers you deserve.

I am slowly learning that no matter what strain of this awful disease you have it will never be cured. There are things that can be done to help and there are things that you can do for yourself that will help. Sometimes the things you should be able to do for yourself, you physically cant do because of the pain but I think you would be wrong to write the pain clinic off. Things have changed a lot in the way people are dealt with now and I think that you might have a better reception if you tried a new clinic. They might be the people that you need to see to get to the bottom of things and to make your life bearable and more painfree.

I know I am probably looking at things through rose tinted specs because I have only recently been diagnosed but I will try anything to make my quality of life better than it is now.

I would reply to the rheumy and make the points that you have made to us. Ask her to validate all of the points. She might have been having a bad day and got out of bed on the wrong side. Better still make an appointment to see her, take someone with you and ask her to her face what her problem is. Explain that you dont think she is taking you seriously and although things cant be explained through the normal routes there must be something that can be done. If she still wont deal with the issue then take it higher.

You have a right to receive the right treatment so fight for it. Dont suffer because someone wont listen. Make enough noise someone will hear you and that someone will be the person who helps you to find the solution you are so desperate for.

stickywicket

Hi Claircoult, How are you feeling this morning? I hope you are at least slightly better.

I can understand your pain and frustration. Twenty years is a long time to have symptoms but no clear cut diagnosis. Might it be possible that you really did have ME at first and the arthritis, whatever variety it is, is of more recent origin? I ask because 20 years seems to me a long time to have any form of untreated arthritis with no obvious deformity (I could be wrong) and you don’t mention deformity.

As you’ll know from reading these forums, a firm diagnosis of any kind of arthritis can take a long time and isn’t necessarily a cut and dried matter. Mine’s officially Stills Disease (Basically, RA with more potential for other bits going wrong – but they haven’t) but, after years of that, I also have OA. We are all ‘works in progress’. It must be very difficult if you have no confidence in your rheumatologist. Is she the only one at that hospital?

Like others, although you’ve had one bad experience of the Pain Clinic, I feel it might be worth having another go. You have a different diagnosis now. What have you to lose?

You say you found acupuncture helped but stopped using it as you prefer to prevent the pain by ‘pacing yourself’. I think that’s an excellent attitude but couldn’t you revert to it still when the pain is bad? It doesn’t have to be an either or thing. So much of this disease consists of juggling options and doing what is best at any given moment rather than putting all one’s faith in one coping mechanism.

I do hope things improve for you and quickly. If you have had ‘a low grade fever’ for 4 weeks I think you should see your GP. This might have no connection with arthritis. Take care.

claircoult

Thanks again for the replies, your support means a lot to me.

Stickywicket - your advice makes a lot of sense, unfortauntely common sense is something that appear to be missing in all the people I have seen over the years.

I don't believe I ever had ME because I never had classic symptoms. I get flares of joint pain and flu like symptoms that are severe for a few weeks and gradually improve over the next 6 months, but the symptoms never completely go away. I was only diagnosed with ME so they had something to call it because they didn't know what was wrong. One I got that diagnosis they stopped looking for anything else and refused to send me to see any specialists. An ME diagnosis is like a curse, you get branded a hypochondriac and no-one takes you seriously.

The flares seem to be triggered by viruses, infections, stress, anything that triggers an immune response which suggests I have an autoimune disease. I have a family history of autoimmune diseases, I had endometriosis which is autoimmine and I am HLA B27 positive which is associated with seronegative arthritis such as Reactive Arthritis. I am also slightly hypermobile and can easily touch my toes despite being overweight and unfit.

Reactive arthritis does not cause damage to the joints. It is not actually my joints that are affected, I personally believe that I get inflammation around the tendons which cause joint stiffness and mild swelling. No-one has ever looked into this. I've never had any scans or anything, I've had x-rays of my right knee, both hands and both feet but they appeared to be normal so in the doctors eyes there is nothing wrong.

The accupuncture was good but I haven't had it for about 14 years so my husband would need retraining and I would need to get needles and a sharps bin so unfortunately it's not something we could just take up again.

Low grade fevers are pretty common for me, I had one on and off all last summer but the GP's didn't do anyting about it. Unfortunately there is usually a 3 week wait to see my own GP and if I get an emergency appointment to see one of the others they either say it's a virus, or give me broad spectrum antibiotics or say they can't do anything and to make an appointment to discuss it with my own GP. Nothing ever seems to get done and I'm fed up of people insinuating that there's nothing wrong when clearly there is!

It is normal for blood tests to come back normal in Reactive Arthritis but it's a double edged sword because it also means there is nothing wrong with me, but if there was nothing wrong with me I wouldn't get the flares, pain, swelling and malaise. I keep going around in circles so much I'm starting to doubt my own sanity!

skezier

Hi Clair,

You have had such a bad time and no wonder your feeling angry.

You have a lot of good advice here but more than that this lot are so good at helping and suporting just by letting you say how you feel so keep talking..... sometimes that really does help.

I wonder if anyone has said fibro to you? The tendon thing kinda makes me wonder.

Its o wrong your labeled with something everything can be put down to, even wronger when the label doesn't really fit!

Pain clinics have changed flower.... maybe its worth a shot? I went to one 25 years ago and vowed never to go to another one but had to 3 years ago and well she has been brilliant. I do know I have been lucky.

Whats your gp like? You need one person to be in your corner.... I so wish you had someone.

I wonder would a different gp help you rather than a different consultant? Clair I am so sorry this is happening to you and wish I knew the answer. I have fought the system long ago and won but its such hard work.

Mine showed up on the scan so again I was so lucky.

I so wish i knew what would hep you but all I can think of is one good, understanding gp might be a way to start. Leaving you a ((( ))) and a hope. Cris x

joanneredshaw

Hi

I am so sorry to read your post, I too have gone through a lot of pain. I do have RA (2006) and have been suffering with Chronic fatigue and Fibromyalgia since sept 2010. Like you I did not know why I felt so ill.Especially muscular pain and muscle fatigue. I cannot do any exercise or walk for very long. Normal daily life is a drain. I had a physio assessment which revealed that my muscles cannot with stand any exertion. My legs, arms and knees can be very painful but gabapentin has relieved a lot of this muscular pain. But stress and the RA do affect the Fibromyalgia. I rely on steroid injections to relieve the RA.
My Consultant and Rheumy Nurse are brillaint and I suppose I am lucky as they do listen to what I am saying.
My Consultant makes most of the decisions, and I only see the Rheumy nurse once every 6 months.
You do seem very similar to myself, but I seem to get better care, I live in Cambridgeshire and I am 43, married with two boys 17 & 15.

I hope you get a better diagnosis and better pain management.
Take Care
Jo