Must Be Insane

[ShellyWelly]

The weird bumps which are very tender are apparently fatty deposits, not Synovial fluid, so the ultrasound this morning was inconclusive for RD. He saw two tiny areas of inflammation but he said because of the tiny amount, he could not confirm RD based on that.

The team there were amazing. very thorough, kind, and the nurse saw me get upset and pre-empted tears before they started. I apologised and I felt like such an idiot. I never, ever used to cry and now I cry all the time.

So my bloods are all negative. My X rays showed nothing and my ultrasound showed nothing.

The nurse told me not to worry, Dr K (my rheumy) would get me sorted. I went into the toilets and sobbed before leaving the hospital. I walked to my car and sobbed in my car before pulling myself together enough to drive to work.

I think it has to be time to leave this community and admit the fact to myself, that I must be somehow making this all up. I feel like I am insane. I must be! There is nothing medically wrong with me! I feel like i'm a liar. Like i'm weak and have no right to complain or feel so much pain. Another blind alleyway that I was so, so certain would this time lead me somewhere.

There is nothing wrong with me, I must be insane, because it sure feels like there is a hell of a lot wrong with me.

[Titchyj]

Hi ShellyWelly, Please don't leave this community. We need you and I think you need us all at the moment.

Here's a bit of my history which may be of some help or not.

In the late 1990's I started getting terrible muscle pains, GP had no ideas as to what was going on and not actually said it, but inferred that it MAY BE ALL IN MY HEAD. Got sent to rheumatologist eventually, waiting times were even worse then than now. After more blood tests and poking and prodding I was finally diagnosed with Fibromyalgia in 2001, not a well received medical condition with a lot of medical people, as they didn't know much about it. This was when I went through all the pain medications and rejected them all due to the side effects etc.,.

Over the years I have acquired very painful nodules/lumps within all parts of my body, I have had quite a few removed, these have come back as being lipomas (fatty lumps), some have said they could be neurofibromas, but no firm diagnosis of this. Some people with Fibro, for some reason or other, seem to have these lumps.

Since 2012/13 I have been diagnosed with osteo arthritis and possible sero negative rheumatoid arthritis with possible diabetic neuropathy, the jury are still out on this one.

I know how you feel, being in so much pain and discomfort, but not getting a firm diagnosis.

Please hang in there, stay with this wonderful community here who will support you all we can until you get the diagnosis that you need and move forward.

My thoughts are with you.

Please keep in touch and let us know how things are going.

Jan

[ShellyWelly in reply to Titchyj]

Thank you Jan x

[allanah]

Don't leave Shelly, loads of us have been there, I'm sero negative and anti ccp negative but have inflammatory r a . It often takes a while so be patient, your Rheumy will continue to look and refer you to people that will know why you have u have these symptoms . Your body doesn't just cause swellings for no reason or lumps as my doc told me!! So don't think your mad keep plodding away and take a friend and list of questions to the Rheumy x

[ShellyWelly in reply to allanah]

Thanks allanah. Finding it so hard to cope with not knowing what i'm facing x

[allanah in reply to ShellyWelly]

yes the unknown and waiting is always the worst but try not to overthink it all, the docs will sort u out even if it takes longer than you would hope xx

[Hidden]

Don't leave Shelly, you do need us! Mine took a year for the full diagnosis to come through for PsA so we all know where you are at, just hang in there, rest when you can, take any medication your GP throws at you. But keep going back to the GP until things are sorted with you. Take care. xx

[ShellyWelly in reply to Hidden]

I do need you guys, you're right Grogje, you are all amazing, but I feel like a fraud given all my tests are saying there is nothing wrong.

[nomoreheels]

You're not alone in your reaction Shelly. For the first time in 6 years I also wept in front of a Rheumy at my last appointment when she told me my pain wasn't due to my RD rather my OA worsening, lumbar spondylosis keeping my cervical spondylosis company & trochanteric bursitis joining the party. Thinking back my tears came on as I was convinced that I just needed my meds tickling as had happened before despite this time my bloods having been reasonably level for months. I felt so flaky & just not my usual "take it in your stride" self but hardly surprising I suppose as I was so tired of being tired & in pain in spite of max dosing 30/500 co-co's. The recent swelling I'd put down to RD is actually OA soft tissue swelling & after my Rheumy requested a full pain med review my GP has prescribed much stronger pain relief, though my system's got used to that now & see her on Monday for a review. I'm now at least getting a few hours comparatively restful s!eep a night though even though the effect is lessening.

Has your Rheumy discussed exactly which way he'll be treating you & what for? I don't know if this link will be of any help really but comparisons may relate to you. patient.co.uk/doctor/Rheuma...

[ShellyWelly in reply to nomoreheels]

I'm really sorry to hear that nomoreheels xx I'm happy you are able to get some sleep and hope you can find something else that will help for at least a while until your body gets too used to them again!

I think that's party of my problem, as well as being scared, frustrated and angry I am just so tired of feeling tired and in pain all the time. Once I'm diagnosed, I don't expect it to all magically suddenly get better, but at least i'd know what i'm dealing with and could move forwards.

I've only seen my rheumy once so far, I see a different one in a few weeks time and him again in just over a month, so I won't know until then whether he is just going to discharge me and say there is nothing wrong from a rheum point of view, so I still have no idea. No treatment has been discussed with me by my GP or rheumy as yet. Thanks for the link x

[hatshepsut]

Please don't despair. I convinced myself that it was all in my head before I was diagnosed with RD, and delayed seeking help.

You know you are in pain, I am sure you will eventually get an appropriate diagnosis. Meantime, you need the support of people who understand, and they are here on this forum.

I have learnt during my journey with RD that blood tests, scans, xrays, are only one part of the story. Most important is how you feel in yourself. I've had spells of feeling relatively ok when all my tests were dire, and other times I've felt dreadful when my tests have indicated an improvement.

You will get through this setback, meantime you're in my thoughts. M x

[ShellyWelly in reply to hatshepsut]

I'm trying hard not to, but i've just got no energy left. I keep trying to stay positive my looking towards the next appointment, telling myself that will bring me treatment and diagnosis, but it never happens. I have to keep telling myself that to get through and am then devastated to learn i'm being sent away to spend more time in pain and unable to lead a normal, useful life. I suppose I will find the energy from somewhere but really, I just want to know what the hell is going on xx

[cathie]

A friend who has experienced very different troubles told me recently to take things one day, even one hour at a time. Try and think of something positive that's about to happen and so on. I really hope you will get some clarity.

[ShellyWelly in reply to cathie]

Thanks Cathie. Changing my mindset so I don't look too far forwards might be an option. I've always set goals as a way of staying positive and productive - being fit for my holiday is my biggest goal and is the kind of thing that I look forward to and would ordinarily help me to sleep at night as it's a happy thought and something to hold on to. Living day to day with a short term attitude is something i've never done, but I could certainly try to see if that helps x

[cathie in reply to ShellyWelly]

Maybe you can do both. I do find that things can be unpredictable (my wellbeing) and planning can be really helpful. I think being part of this community with its experiences is really valuable, so do stick around!

[Hidden]

Please dont leave the community. They help us cope so much. It is hard not knowing what you are dealing with. I feel like a fraud and hypochondriac at times and feels like no one believes me as most of the time I look ok and put on a face but the pain and fatigue is just too much to bear and when Im alone I just sit and cry. I was diagnosed in March 2014 with fibro, sero neg RD. ruptured achilles and osteo, after over a year of not knowing what was wrong with me and blood showing nothing, but because I have lumps on my heels and the Rheumy I saw was interested in achilles he gave me a scan on my hands and feet showing small amounts of inflammation which he advised were sero neg RD. But the last rheumy I saw in August who didnt even examine me, wrote to my GP stating that as only a small amount of sinovitis showing on scan no RD but he still prescribed Hydroxychloriquine (without an eye test). My body states different and I know I have inflammation I can feel the pain of it. Last week I had an appointment with ENT after 5 months with a throat problem. I kept going to my GP and getting no where I was told it was in my head but then so worried it may be cancer I demanded that my GP did something. I had an appointment with ent within a week and I was diagnosed with Sjorgens and reflux. I am still convinced that I have a thyroid problem but cant get medical profession to check. Its like hitting your head against a wall. I hope you get an answer soon. Take care. Gentle hugs Joolz.x

[ShellyWelly in reply to Hidden]

Joolz, I'm so sorry to hear your experiences and that it's been so tough

I can relate to worrying over not knowing and thinking the worst. It's very distressing.

This community has been amazing, but until I am diagnosed I almost feel ingenuine you know?

Thanks for sharing your route to diagnosis with me.

*massive hugs* xxxx

[Someonesmother]

Oh you are not insane and you shouldn't leave as we all need each other. I like you have had an up and down diagnosis and because I am sero negative they can't make up their mind what is wrong, RD, Lupus a combination of both???. My rheumy said he knows I have something but it may take 10 years for it to show so he is treating me as best he can so I can stay at work and try and have some sort of life. He thinks I probably also have fibromyalgia which does not show up in any tests apparently. Don't give up, hang in there and stay with us, at least we understand how you feel and you won't get that anywhere else.

[ShellyWelly in reply to Someonesmother]

Sorry to hear you've had it tough. It's good that your rheumy believes there is something wrong with you and is treating you. I hope you are able to get to the bottom of it soon.

I'm just so scared that I'll be told there is nothing wrong and that I can't be helped

Thank you for the support xx

[Someonesmother]

It took 2 years and a lot of standing up for myself. I was like you and wanted to chuck it in and walk away but everyone here encouraged me to stick with it and while I don't have a proper diagnosis, at lest I know I am now supported by the rheumy. Looking down the barrel of lots more years and trying different drugs doesn't excite me one bit but at least they are trying. My problem is that I have had reactions too the ones I have taken and can't take MTX as I also have a liver problem, so that is out too. My pain levels are not controlled so I can sympathise with being so fatigued you could fall down on the spot. I really hope you get answers soon and that you can get some help.