Help please

Billylyne5

Soooo upset and cross, just had a letter from the rheumatologist saying that the synovitis in my wrist is normal and not inflammatory arthritis and she is discharging me and wishing me well.
So the fact that I have all this joint pain is normal is it. Pain in wrists, hands feet ankles. Fatigue generally feel yuck, dry eyes.
So basically I am back to being left in pain and to get on with it.
I just feel like I am going mad what the hell do you have to do to get someone to actually help, symptoms aren't enough
Sooo frustrated and fed up and don't know what to do now

dreamdaisy

This struck a chord with me because I was initially dismissed by rheumatology as being orthopaedics problem: I proved them wrong but it took some time.

There are many forms of auto-immune arthritis but I know this is cold comfort. We now live in an age where instant answers and solutions are the norm but in the arthritis world this is not necessarily an option. Once rheumatology accepted me as their patient I was given the umbrella term of having an 'unspecified form of inflammatory arthritis'. That was in 2002 but my label changed in 2007 - only the label changed, the meds remained the same.

I am familiar with the pain in various joints but the dry eyes? I've not had that but to me it is reminiscent of Sjogren's (another auto-immune condition and some on here have it). As for the fatigue yup, I know that too because it rarely leaves me alone. I have gravy, custard and cement days - of the three the gravy ones are the easiest to navigate. I am not a doc or a rheumatologist but I suspect you may have to stand your ground to gain further investigation. I reckon you need it and I assume you have told all the medicos involved with your care about what is happening: believe you me, it is very easy to forget to pass on what is blindingly obvious to us because we are living with it. DD

barbara12

hello
This mirrors so many peoples story's with Rheumy's and GPs..Its not going to be easy but you must make yourself heard some how , I have been banging on for 5 years now and just getting then to take me seriously that there is more than OA going on.So you either go back to your GP or ask to see another Rheumy
I do wish you well and please let us know how you get on

stickywicket

This must be very frustrating for you having two rheumatologist (Or is that one rheumatologist twice?) saying you don't have an auto-immune arthritis.

Do you have any family members with an auto-immune disease?

I have read that Sjogrens usually takes nearly 4 years to be diagnosed. Usually, but not always, the RF factor is present.

Are you still receiving treatment from your neurologist? Did he definitely think you had small fibre neuropathy?

Unfortunately, both dry eyes and synovitis can have multiple causes. You are right that RA usually attacks small joints symmetrically but that doesn't mean to say you do have RA. OA more usually attacks larger joints but the thing about all forms of arthritis is that they haven't read the rule book.

What meds have you been prescribed?

Billylyne5

The whole thing started 20mo the ago and initally the neurologist thought it was possibly Ms but then after mri's etc he has said a working diagonosis of small fibre neuropathy, but that's not even definate as its a diagnosis of excluding everything else.
I have been trying to get a rheumatology refferal for months because of the joint pain, fatigue, dry eyes.
I saw an ophthalmologist last month who diagonosed dry eyes and prescribed drops and ointment.
I was on carbamazipine for the SFN nerve pain but this effected my liver so I had to stop.
I also have developed GERD which I take omeprozole for.
I cannot take NSAIDS so my option for pain relief is paracetamol
I did try cocodamol but it just makes me too groggy to function.
I saw the same Rheumy twice she initally said it most likely was sjogrens but then when I went back the bloods were negative so she said no I don't have any inflamation or antibodies so she could help me.
I pushed her about my joint pain she said my wrists look pristine but agreed to the ultra sound. And now she has discharged me.
I have horrible foot pain, every step I take hurts I have seen a podiatrist who can't offer any help as he said my feet look ok. But they are tender on the top and bottom.plus ankle pain.
At the moment I feel abandoned with lots of unpleasant symptoms that are impacting on my life, I gphave had to change my car for an automatic, I have had to cut down my hours at work, I struggle with lots of day to day things, drying my hair, cutting up veg, putting petrol in the car, walking. Quality of life has definately declined.
I just feel like I am going mad I am 44 and feel about 90.
I am really worried about going for a second opinion and having the same issue with a doc that focuses on blood results despite even the nhs website saying that not everyone has positive blood results for either sjogrens or inflamatory arthritis

dreamdaisy

My bloods have always been negative for RF but that is because I have a sero-negative form of auto-immune. (I didn't know about these things back then.) What clued my second rheumatologist in was the high levels of inflammation with my ESR and CRP figures. They were above 100 for some time (they are supposed to be less than ten, or even better five) and are now under excellent control with medication. I was initially given the label of unspecified auto-immune inflammatory arthritis, it wasn't until I was ten years in that my skin obliged with a bout of psoriasis on my palms and soles that the medical penny dropped. Nothing else changed though, I stayed on the same kinds of meds.

I remember my first five years of it with my then GP telling me that my fat left knee would sort itself out. She didn't see any need to drain the fluid saying it would probably return but that my body would absorb it and sort it out. Hmmmmmm. By the time orthopaedics had to sort it for me it was 27" in circumference due to fresh and solidified fluid. My left knee is now pictured in surgical textbooks - I haven't looked.

We have to fight sometimes to be noticed and listened to, and the onus falls upon us to explain what is happening as clearly and succinctly as possible. Are you keeping a diary of pain and tiredness levels, plus anything else you think may be pertinent? This can be a useful aid if the doctor is presented with a bullet point list of effects rather than trying to analyse a verbal account - we all know how easy it is to go 'off topic' when in a conversation.

Any form of auto-immune arthritis is complex, and many have over-lapping symptoms: it can take some time for us to feel as though we are getting anywhere. I know it did for me. DD

AnnaMilton

Sorry for your sufferings, Billylyne5. I have RA and diagnosis came much later after fighting with symptoms over 6 months. Many of the time it is due long lag in between getting referral than patients delay in reporting symptoms, as in my case. However, in your case, getting to “on-paper diagnosis” could be really annoying. There is no single test to detect it, moreover it is very difficult to diagnose in early stages. As a result, doctors tend to look with scepticism upon portrayals of RA which sound dramatic or extreme. I am familiar with this kind of fatigue that drains you completely, so just go easy with your body and rest whenever required. I can’t say much on your regimen but dry eyes? I know not only arthritis, but there are many other causes that can lead to dry eyes including few medications too. Have a diet rich in vitamin A. You can ask your pharmacist and get the right OTC eye drops. Hope you get the best treatment soon.

Anna.

Billylyne5

My dry eyes are being treated by the ophthalmologist so that is managed, I am not taking any meds that cause dry eyes, as I only have 10mg of omeprozole a day and that's it.
Dry eyes are definately linked to various autoimmune conditions including RA and sjogrens.
To be honest I don't really care if I have a diagnosis I would just like a doctor to actually listen to me and offer some kind of treatment/ management plan
I have heard of people being offered trial of steroid for a very short time to see if it helps, and of doctors who treat symptoms, not just blood results.
I understand that many of the medications are very toxic, but I am current,y being left to manage on paracetamol and frankly I think chocolate buttons would be more benefit, at least they taste nice.

stickywicket

Billylyne5 wrote:

Dry eyes are definately linked to various autoimmune conditions including RA and sjogrens.

That's true but, unfortunately, they can also arise independently.

Billylyne5 wrote:

I don't really care if I have a diagnosis I would just like a doctor to actually listen to me and offer some kind of treatment/ management plan

If you feel your GP isn't listening then go to another or change practices. It's easily done and several people on here have done it with good results.

I feel for you but all I can say is that this is how things are for so many. All you can do is monitor, keep a diary of pain, fatigue and other symptoms and any new places where it occurs and take photos of any swelling.

There are lots of different ways of coping from day to day and many are suggested on our 'Ideas to make life easier...' thread above. You could also check out Arthritis Care's 'Self Management' booklet.

You could pay to see a rheumatologist privately but, at the end of the day, if it was again decided yours was not an auto-immune arthritis, you'd be discharged back to your GP.

This might be of interest (http://www.arthritisresearchuk.org/arthritis-information/arthritis-today-magazine/151-winter-2011/a-diagnostic-challenge.aspx ) but please bear in mind that ARUK is a very genuine site. Don't go googling. There's a lot of dodgy stuff out there.

Billylyne5

I am very happy with my GP she does try and help, but she is limited in what she can do. I am a nurse so I am well aware of what is reliable info and what is not on the Internet.
You are correct re the dry eyes and it maybe just a coincidence that that has started during the course of all the other symptoms. But that is often why people wait so long to get a diagnosis because symptoms are not linked together.
It may well be that it's not autoimmune, but it's something and it's getting worse.
I have a diary of symptoms etc unfortunately the consultants I have seen have waved it aware and were not interested in any kind of chronology of symptoms.
I think that a doctor should at least carry out an examination on a patient, it is a very important part of patient evaluation and the rhuemy did not lay a finger on me at all. So I feel that the whole 8 minutes she afforded me was not enough to be able to evaluate effectively. It was quite clear that her diaognostic process relied entirely on blood test results.
I have had to make life style changes a new automatic car, cut down my working hours, relying on other half to do the house work that causes me problems, hoovering, ironing cutting up the veg, putting fuel in the car etc.
Thank you for the link I will take a look but the Rheumy told me that while I have the symptoms of sjogrens I cannot have it as I do not have positive blood test results. I challenged her over this as I know it can be diagnosed without but she simply said some doctors would diagnose without blood results but she never would. My ophthalmologist said not everyone has positive blood results for it. But she cannot diagnose it.

stickywicket

I think 'succinct' is the vital word for consultants. I imagine they despair if confronted by chapter and verse but maybe a few bullet points?

As a nurse, you'd know better than I but I don't think a rheumatologist has laid hands on me for about 15 years. When they have done, before then, it was usually to feel the heat coming off my inflammation. Yes, I think they feel the diagnostic tests give a more accurate picture these days.

You are truly in a no-win situation. I think you can only be patient and monitor and deal with the symptoms until / unless something new crops up. Unfortunately, that's good practice for arthritic life anyway :roll: