Not diagnosed: Hi Everyone - I have not even been to... - NRAS

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Not diagnosed

CDreamer profile image
5 Replies

Hi Everyone - I have not even been to the GP yet but will go if symptoms continue, just wanted a view - know you cannot diagnose!

In the last few weeks my knees are very stiff in the morning and become very painful after standing for some time. My knuckles are sometimes swollen and some are becoming difficult to straighten my fingers, mostly in the morning but both improve during the day. There is RA and rheumatic fever in my family and I have had 2 other autoimmune diseases - Ulcerative Colitis & Myasthenia gravis (muscle weakness from nerve/muscle junction). At present I am not on Pred - treating the Mg with immunosuppressant Mycophenolate mofetil.

I know autoimmune diseases come in clutches and as I was a competitive dinghy sailor in another life, sort of expected arthritis to appear in some form, at some time - fingers and knees fit.

My questions are:-

My levels of fatigue have increased dramatically in the last week or so although my Mg hasn't flared so could this be RA symptom?

I have been advised to see a particular GP in our practice who is a rheumatologist - how is RA diagnosed? Are there blood inflammatory markers?

I also have muscle pain, especially calves which get very stiff, neck and shoulders could that be connected to RA?

If diagnosed what is usual treatment?

If anyone else has multiple autoimmune diseases do you see individual specialists? There are many meds I cannot take which can cause difficulties ie:- I have had heart arrythmia but cannot take Beta blockers or anti arrythmia drugs of any type so what I am afraid of is a prescription for RA which may be harmful to other conditions.

Has anyone managed their RA through diet and how effective is that? I ate sugar the evening before last and suffered far more than normal the next morning and had a really bad day yesterday.

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CDreamer
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helixhelix profile image
helixhelix

You're right, we can't diagnose. But if i were you with that list of symptoms I'd be knocking at GPs door ASAP. The sooner you're treated the better the outcomes.

Rare to get a GP who's also a rheumatologist, but certainly head that way. Normally a GP can't actually diagnose, as some of the blood tests on inflammatory markers and antibodies, and prescriptions can only be issued by a rheumy (NHS cost cutting measures I think). However they can do basic blood tests and refer. The diagnosis is made from a mix of your physical symptoms, blood tests, family history, and how you say you feel. Keep a note of all the symptoms as they often come & go.

And consultants are well used to multiple conditions, so have information about contraindications of drugs at their fingertips - but always worth double checking of course. Rheumatology does cover multiple conditions, and usually you'll have a lead consultant for whatever is decided is main issue who will liaise with others as needed.

Fatigue is a classic symptom, also the 3 S's - stiffness, swelling and sore joints. Hands and feet are classic starting places, and often you get secondary osteoarthritis in knees hips & shoulders to add to the fun. Also the changes to joints often cause knock on muscle problems.

I use diet, but as part of the management of the disease. It really helps me cope with the drugs and that plus exercise & proper sleep mean that I'm now well controlled. Personally I truly believe that you can't manage this with diet alone - unless you are a very rare case of mild palindromic arthritis. Others differ and this is often a heated topic.

Take it one step at a time, and don't panic too much. For most of us this is manageable.

Hi

Just wanted to direct you to the NRAS website which I hope will give you a great deal of information in regard to your questions. The website nras.uk.org has a section on diagnosis which you can find on this link nras.org.uk/diagnosis - articles in this section also discuss blood tests, the diagnostic process which involves blood test results, clinical examination, family history and your own reported history of symptoms - keeping a short diary can help to accurately describe this to the GP/consultant when you see him/her- how RA is managed and the drugs usually prescribed.

Fatigue is certainly one of the major symptoms for those with RA, especially in the early stages when medication has not yet kicked in.

There is also some diet advice on this link nras.org.uk/diet-rheumatoid...

If you would like to talk things through with our helpline team, please do not hesitate to give us a call on 0800 298 7650 - Mon -Fri 9.30-4.30

Best wishes

Lorraine

Livingston profile image
Livingston

Please go & see your GP with this sooner rather than later - the diagnostic process can be a long one & as Helix says, the sooner you are treated, the better the outcome.

earthwitch profile image
earthwitch

Inflammatory bowel diseases like Ulcerative colitis or crohns very often go along with ankylosing spondylitis (in as many 30-40 percent of cases I think), which is a seronegative inflammatory arthritis that primarily affects the spine but can also affect any other joint. Usually sacroiliac joints first, but many people (especially women) get more problems at first in their neck.

RA is generally first screened for with blood tests, but if they are negative, then still ask to see a rheumatologist (preferably one with an interest in spondyloarthritis) as it could still be one of the spondyloarthritis group, which includes ankylosing spondylitis or Psoriatic arthritis, or enteropathic arthritis.

CDreamer profile image
CDreamer

Thank you all for your most helpful comments and the links.

I am on holiday in Spain for a few weeks but will plan to see the Doctor on return. Hopefully sun, warmth, healthy eating and relaxation will set me up for the thought of dealing with yet another autoimmune disease.

Best wishes CD

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