Connective tissue disease

[Coffeemum]

Hi everyone, I had a telephone appointment from physiotherapist yesterday thinking it was to be finally diagnosed with fibromyalgia, instead I was told that one of my bloods was positive for connective tissue disease and I need to have my bloods tested again in 3 months time and my urine tested for proteins. Has any of you experienced something like this on your journey for diagnosis.

[Alltheflowers]

Hi Coffeemum, sorry to hear your appiontment wasn't as you thought it would be.

I've not been diagnosed with CTD, but it did take me many years of various tests to be diagnosed with fibro. And for a long time I wasn't believed and had it put down to anxiety.

As I'm aware there are different conditions that come under Connective Tissue Disease -have they give you any indication which it may be? One of the the most common is RA, but I guess they are to doing further tests to confirm which specific condition(s) it is.

I do hope you get a diagnosis soon - whatever it may be - so at least then you know what you're dealing with and can take measures to conrol it.

Take care.

[Coffeemum in reply to Alltheflowers]

Hi, I have already been tested for a lot of things and have seen 2 neurologists over the years. Ive been told its not RA so that one's ruled out. The physio said it's not her area of expertise, she is just ruling out anything it could be from her line of work and if my blood tests are positive again in 3 mths time then I will be referred to rheumatology which is what I asked my gp to refer me to in the first place but I ended up with a physiologist. If my bloods come back normal then she will diagnose me with fibromyalgia. Will just have to wait and see what my next blood tests show.

[Al10]

Now coffeemum, you are maybe starting to guess why drs call us patients. Your sure need tons of patience to endure being sick! Probably more than ever since the poor NHS is so sick too!

It's a bit of a merry go round you just got on. The more things they test, the more likely they find odd results. Lots of times these results turn out to be idiopathic, normal for you maybe? Not worth worrying over. Although who knows? That's why they retest, to be thorough.

The trick each time something gets ruled out is to remind the quack, although you are pleased that the plague, or whatever,? has been ruled out and inwardly you are doing the happy dance, you do still need answers for your symptoms. Drs like to keep reminding us about the cost of all their investigations, as though we should be satisfied with half a job being done. Or can be shamed into accepting that.

After a while of kicking the can down the road, waiting on tests, waiting on results, ever waiting to do over, you likely find yourself being reprocessed. Long time since we tested for thyroid or some such, where you first started? Meaning you never get to the end of the slew of testing required to rule out everything, and rule in fibro. Merry go round!🙄

Sorry if that's unhelpful, but given that's where I've been, more than once, I figure it's worth mentioning in case it helps someone else getting a timely diagnosis.

Remember, you don't want a fibro diagnosis, you want a diagnosis of what ails you, which may or may not turn out to be fibro.

[Carlt in reply to Al10]

"Remember, you don't want a fibro diagnosis, you want a diagnosis of what ails you, which may or may not turn out to be fibro"

Your last sentence changes all the rest of your post from "kicking the can down the road" to "diligent testing to rule everything else out."

My fibro diagnosis took about 5 years and each time a test ruled something out my response was... "Okay, it's not that. What's next?"

Diligent testing is far preferable to a GP not being interested and bunging you on painkillers or anti-depressants.

[Al10]

Absolutely! Just keeping the momentum is hard. For both sides! The GP has to justify the cost of all these tests.

My GP/s were definately not interested in those days. Anti Depressants are the fix, along with pain meds Yay! So much harm done. I hate having to say I have fibro because I still see those attitudes that mean they just lost all interest. I seriously believe there are many Drs who have happily prescribed meds just to dull down their annoying fibro patients and keep them quiet. I hope now the truth is coming out about the efficacy of some of these drugs and how damaging, attitudes are changing.

Sorry if I'm sounding negative today. I guess, there is still some anger lingering.

[Sparklingsunshine in reply to Al10]

I've always felt Fibro a bit of a dustbin diagnosis if I'm being brutally honest. Ie we've ruled out anything really serious of or life threatening, we cant label you as hysterical or malingering anymore, its not pc,we'll give you a syndrome to call it, some antidepressants and painkillers now please go away and stop bothering us.

I've given up with the NHS, unless I'm dying I'm staying away. I take care of myself these days.

[Sparklingsunshine in reply to Al10]

I've got to the point I avoid mentioning I have Fibro because its a nice, lazy label for disinterested medics to blame everything on. From an ingrowing toenail to piles, you bet they'll somehow manage to assign it to Fibro. I pray I never have a brain tumour as Fibro will be the cause, no doubt.

Its funny as its the complete opposite with underactive thyroid, which I also have. There if your blood tests are anywhere in range, even scraping along the floor, then if you're feeling bad, no way is it your thyroid to blame. No siree, you must be depressed, anxious or menopaual. Doctors are such hypocrites at times.

[Al10]

Sadly what you say is too true. I had an injury, explained how it happened to the GP, how I could barely walk etc. I was pretty tearful because of the pain. My GP said not to worry. Had I given any more thought to trying anti depressants again? A look at my notes years later shows he discounted my story and blamed the pain etc on my 'ongoing condition'. Me seeking correct treatment at the time, I'm informed by a specialist, would have saved the situation becoming impossible to treat. So it's my fault.

I have no trust in the medical industry now. I know they can do great stuff but I can't just blindly trust like I used to.

[PurplePow]

I have read that people suffering from Ehlers Danlos are sometimes mis-diagnosed with Fibromyalgia. I am on a waiting list for genetic testing for ED. It is also a connective tissue disorder in that it affects collagen production.

[Coffeemum in reply to PurplePow]

I have never heard of Ehlers Danlos, but to be honest I had never heard of fibromyalgia either. I still don't know what connective tissue disorder they are testing me for, I was just told it was positive and being re tested in February. I feel I'm always left in the dark and always waiting. We do have lupus in the family but it's not a close relative it's my mums cousin so I don't no if its relevant or not.

[Lu-La]

My friend has this and fibromyalgia too, they go together, you could have both.

[fmlife]

not heard of that phrase before, my journey started with costochondritis, which is in easy terms, a painful swellings of the flexibles in centre of chest. fibro was also confirmed at time too.

[Waterlogged]

sad,h I was to,d this, after bleating for 18 months, conective

[Waterlogged]

sadly, I was told I had inflammation of the connective tissue to my major organ's, and told I would wait 18/2 yrs for app. A young GP in new surgery sent me for X-ray . From there my cancer was flagged up, and told if GP had sent me for investigation the, Iwould be living with cancer not dying. Please insist you are thorogjly checked, and keep on top of your investigations. I feel everyone should have an annual MOT test for-early stage cancer. Kind regards. Mara

[Coffeemum in reply to Waterlogged]

My goodness, Im so sorry that u wasn't investigated sooner. If we didn't have to keep waiting and waiting to be seen and investigated we would all be in a much better place and looked after like we should be and to be listened to. Thank you for ur advise I will keep pushing forward with my investigation. Take care x