Getting desperate

[whisperit]

Hello,

2 years ago, I was diagnosed with Undifferentiated Connective Tissue Disease and Interstital Lung Disease. Up till that point, I was a fit 55 year old, working at 3 part-time jobs and enjoying hillwalking in my spare time. My initial presenting symptoms of shortness of breath and joint pain have since been well controlled. However, I am now so intolerant of any kind of exercise or effort that I am effectively housebound. For example, this morning, I took the bins out and then had to spend about 2 hours sitting quietly before the feelings of flushing, nausea and exhaustion subsided. Earlier this year, I had to take ill health retirement.

My current meds are: hydroxychloroquine 400mg; prednisolone 4mg; bisoprolol 1.25mg; amitriptyline 20mg; lansoprazol

My rheumatologist says I have Fibromyalgia, although pain is not a significant symptom. I have had physiotherapy (graded exercises etc) with no effect. I have had numerous cardiology investigations which show NAD. Poor sleep quality does seem to be an issue. My rheumatologist says to increase the amitriptyline and to start gabapentin. My neurologist says to stop the amitriptyline and start a SSRI.

I get the feeling that no-one really knows what is going on.

If anyone has ANY ideas, I would be most grateful. Thanks!

[Maya23]

Oh how frustrating! It's really difficult when different consultants disagree on treatment. Is there any way you could talk to your GP and discuss the confusion? Maybe get them to contact both consultants to make them aware that they are working at cross purposes?

[whisperit in reply to Maya23]

Yes, I have been sticking with one GP so far just to try and keep track of everything. But the time has come to get someone more proactive. I'm going to try and make a switch tomorrow! Thanks x

[Hidden]

Unfortunately i am in the same boat as you and i think there is a hole in it!

Although there is a big age difference, the sympton rubbish is the same.

I have resigned myself to go with the flow. Apart from tweaking my meds a little myself as to what i feel like on the day, i just enjoy the good days and take the bad ones for what they are,bad days.

My turning point actually came when i stopped looking back to my "normal " life. No regrets. This is what it is and i just get on with it.

Hope this helps.

Hugs

[whisperit in reply to Hidden]

thanks ursi, I am struggling with that atm. But that may be the "solution" - its an even bitterer pill than hydroxycholroquine though x

[whisperit]

thanks Ajay575,

I've avoided the whole PIP thing so far, as it's all been such a sudden deterioration - I've been so busy getting investigated, starting and stopping meds, negotiating pensions etc that I haven't given it a thought. But it's a good point x