Rheumatology results

[kazhodluckymilo17]

Well all my results came back negative rheumy was thinking connective tissue due to all my symptoms... relieved but also very confused so I guess I will just suck it up buttercup and carry on even though I feel like caca most days......she has prescribed a baby dose of Amitriptyline for the fibro, after me having a reaction to the pregabalin I dont seem to do well off quite a bit of medication.....she is organising a nerve conduction test and I have to back in four months to see one of her colleagues who specialises in raynauds.

[Footygirl]

Hi Kaz I hear you. Another 4 months?Yeah sure, I'll just fester in the corner for another 16 weeks, if you want. How long have you been waiting for a diagnosis? It can be sooo frustrating feeling poorly and no immediate treatment. Doing the same at the moment myself and if it wasnt for the fatigue, I'd really get worked up! 😡

Sometimes it is not actual meds it can be what they bulk it up with that causes the reaction. Still no comfort for you in that at the moment.

Glad to hear she is still testing things as this may well be a clue to working out things for you

Remember you are not alone. We all share something of your challenges. Tough going sometimes, but we are here to support you through thick and thin.

Hang in there, lots of hugs OOOOOO

⚽️

[kazhodluckymilo17 in reply to Footygirl]

Thanks footy girl she could have just discharged me from her care altogether I suppose and not even refered me on to someone else....I have been having various symptoms for years, sore joints, constant UTI, raynauds, SVT, oral lichen planus, mouth ulcers, migraines etc, had scans cystoscopies ct nothing ever gets found ... been asking for over a year for referral as I had enough of feeling rubbish I know ANA isnt a conclusive test but had a positive one previously and now all negative maybe I was just being to hopeful in getting some answers.... never mind i have coped for this long I am still going to just do a bit more wait and see and will make a note of anything else that may give a clue to whats happening.....this site has been brilliant with advice so I know where to come if anything else crops up x

[Squeeshy]

Sorry to hear all the trouble your having I waited seven years for a diagnosis with very few on and off symptoms at first multiple referals and misdiagnosis until just over a year ago and was fully controlled until lately. I have sero negative sle all negative blood work but extremely progressive sometimes took me a huge fight and a lot of trouble but there is hope I know it's a pain and extremely hard but there is always light at the end of the tunnel.

keep your head up and keep strong

[watercolour in reply to Squeeshy]

Really interested in your case as I am the same the fight has been mega! X

[Squeeshy in reply to watercolour]

ask away I have no kwams it can be extremely tough, frustrating, disheartening confusing and so much more

[kazhodluckymilo17 in reply to Squeeshy]

Thanks squeeshy I will keep my chin up because what else can I do, beginning to feel like a hypochondriac but I know something isnt right with me...I just find it hard putting a happy face on at work all the time especially when all I really want to do is go back to bed to catch up on sleep.

[Squeeshy in reply to kazhodluckymilo17]

Always try and let work know what's going on as they can try and help it can be really useful letting people know what's going on because then at least you can let them know when it's being a pain it can work wonders sometimes. And just remember you not a hypochondriac this is happening and every little piece of information can help and you tracking it yourself and making notes you can spot patterns and many things and sometimes is a great comfort.

[kazhodluckymilo17]

Thanks squeeshy I'm trying my best to stay strong...its not beaten me yet just finding it so bloody frustrating .

[Squeeshy in reply to kazhodluckymilo17]

It is so frustrating trying to get a diagnosis but you know yourself best keep a diary of symptoms and when they happen and the severity of them can help wonders

[EOLHPC]

Hang in there Kaz: I like your attitude! please do continue to trust your instincts...you know your body best....continue to keep track of your multi system symptom patterns & what makes them better or worse, take pics of anything visual....the diagnostic process can take quite some time....make the most of any relationship with any Dr who clicks with you...hope you'll let us know how things go

[kazhodluckymilo17 in reply to EOLHPC]

Thanks BC x

[23_molly]

In the US no different. Lupus Dx still not firm after 15 years. Like you, I have the whole combo. Document every detail, as suggested. Note all family history--Sjogren's, IBS, etc. Save your blood labs. Watch your kidney numbers. Yes, photos. Taking Plaquenil has made an enormous difference in two weeks. Does Fibro always morph into SLE? The diagnostic criteria for SLE are way too high, IMHO.

[watercolour in reply to 23_molly]

I wonder who wrote the harsh tiagnostic criteria? It must be people who are unaware of how debilitating this all is

[23_molly]

I am writing only from my US point of view. Have thought UK was more enlightened and funded research to a greater extent. Fibro has no objective criteria. The modus operandi was "if you can't measure it, it doesn't exist." I suffered abuse by my physical father and surgeon brother. They thought me to be a malingerer. Ph.D., university appointment and all. Now that I present with the butterfly and my kidneys are half gone (GFR 44), I am being taken seriously. Perhaps I have SLE! Or is it RA? Have been taking hydroxychloroquine for three weeks. Symptoms have improved, even Sjogren's and IBS, though I still have the rash. It's a mystery, still, if doc will pronounce it SLE. Here criteria are written by a committee of the American Academy of Rheumatology. IMO those ought to be revised.

Years ago a rheumatologist asked a friend of mine whether she "wanted" to have lupus. "No," said she. "I only want to know why I feel so ghastly." Same with many of us.

[misty14]

Hi Kaz

So sorry you are struggling with your health and getting a diagnosis. I'm like you in that I had positive ANA years ago which has changed to negative and after 28 years of ill health have a diagnosis of UndifferentiatedCTD!. There is a huge group of us now and Rheumatology needs to acknowledge us better and not make us feel like hypochondriac 's!. It is good you are having a nerve test and seeing a Raynauds Specialist. Something could come from this so hang in there!. Not always easy I know. What dose of Amitriptyline are you trying?. You may find its not enough for the fibro pain. I take 20 mg but get side effects if it goes higher. I too tried Pregabalin and had a reaction. Horrible!..

Keep us posted as to how your doing and rest assured your not alone in your struggles!. X

[kazhodluckymilo17]

Thanks Misty, She just started me on 10mg to see how I go because of how I reacted to pregabalin but said it can be upped if needed....I get a bit reluctant to start new medicines because I dont always get on with them especially stuff for pain .... morphine codeine naproxen tramadol to name a few.