Cardio work up and a question about sunshine triggering SFN

[MAT51]

Hi All. Just to update - I'm to have a cardio work up at the "rapid response chest pain clinic" this Friday. I was referred by my GP back in January because of my family history of Angina/ Atherosclerosis and the heaviness in my arms and legs. I don't actually have chest pain unless GERD and gastritis areactually this. I guess this is all as well really since I was referred at the end of January and this is the NHS's idea of "rapid" lol!

I'm increasingly sure that my problems are actually due to Sjogren's related autonomic dysfunction rather than primary cardiovascular disease. But I'm thinking that it is unlikely that the tests I actually need will ever be forthcoming. I saw my neurologist last week and she said she will not be referring me for further investigations since I'm on Mycophenolate. She says the problems I have when standing (feel faint and as if legs will give way), probably relate to Sjogren's fatigue and my small fibre neuropathy (presumed rather than confirmed). I will meet my new rheumatologist on 25th and will be having a nailfold capilliary test for Scleroderma or secondary Raynauds.

I'm worried that I'm always focussing on the wrong symptoms and potentially misleading my doctors. I need to focus on the symptoms which are most distressing but they often seem relatively trivial. Also if I appear to know quite a lot then my neurologist assumes I'm "overthinking" and that trying to make my symptoms fit various related conditions I think. I feel I can't win because if I stick to reporting symptoms she still just stares at me strangely. I think she assumes I'm on heightened alert to the workings of my body now. I think my historic experience of pain means I'm very used to it and if anything tend to brush it off or fail to identify its severity until it is truly horrendous.

My SFN has been flaring a lot in my feet and legs for a week now and the only thing that helps a lot is dyhydrocodeine with paracetamol. I've also had five weeks of what my doctor thinks is a sinus infection which I was prescribed Amoxycillin for.

When I told my neurologist about this SFN flare she simply focussed on pain relief options from norotryptline to Pregabalin - made no attempt to confirm my symptoms with skin biopsies or tilt table etc. I suspect this is just because of the financial constraints on the NHS now and because my Sjogren's has been histologically confirmed so she feels it's safe to presume that I have SFN that will probably be self limiting and same for autonomic dysfunction. She knows I'm tolerating Cellcept well and hopes it is helping. She pointed out that it is likely that some damage to connective tissue has already occurred so not to expect too much from this immunesuppressant. I have no interest in taking the medications she's suggesting. She will see me again a year.

So now I'm left to trying to work out what might trigger my SFN flares and wondering if sunshine could be a potential  trigger? The flares seem to often coincide with lovely weather - but maybe I'm just being fanciful. I do sometimes get small outbreaks of non itchy petechiae on my shins and ankles during these flares. Just wondering. I'm getting panicky that I'm going to be left to it by my new rheumatologist too. They all believe that the SFN and automic issues of Sjogren's tend to run their course but not progress. I do hope they are right but I'm not completely convinced.

[jazzlover]

I'm sorry you are having such a struggle to get any real help. I noticed several things which made me wonder if the following might be an issue for you??

Mast Cell Disease 101

http://www.sneeze.com/allergy-resources/mast-cell-disease-101/

When to Suspect MCAD.

http://ohtwist.com/what-is-mcad/when-to-suspect-mcad/

See what you think .. it could greatly help relieve some of your symptoms if it were treated properly.

[MAT51]

Thanks Jazzlovover. I have actually wondered about this before and asked the rheumatology doctor who thought it might be relevant until my Sjogren's was confirmed by lip biopsy and since then all my symptoms are blamed on this. I don't really know how I would steer additional tests for a diagnosis of MCAD when there is so much overlap in symptoms. I should mention that I also have Raynauds. I do take antihistamine every night already. I used to have severe eczema and alopecia and have had slow anaphylaxis on a couple of occasions but it is now believed that most of my symptoms are autoimmune, relating to untreated Hypothyroidism when I was younger and confirmed Sjogren's now.

It would be hard to pursuade my doctors to test for anything else now apart from confirming the cause of secondary Raynauds and whether my Sjogren's is primary or secondary.

[jazzlover]

That's really sad. I take Pepcid and Zyrtec .. which gives it a one/two punch.

MCAD is thought to be the basis for MANY autoimmune diseases. I have Sjogren's and Raynaud's myself.

(You might consider an immunologist or allergist)

[MAT51]

If I can find the right moment I will defintely ask. Many thanks. Meanwhile I do at least take an antihistamine nightly.

[Dryguy]

Hello Mat51. I have SFN on my upper torso and sunshine does seem to make mine flare. I consequently wear a light weight jacket zipped up to the neck in the summer time.

Here is a link I started about a month ago. I hope all the replies come up as well. Posters on this blog seem very helpful

The Dr Oaklander video is about an hour long, but worth the watch.

https://sjogrensworld.org/index.php?topic=30405.0

[MAT51]

Thanks - will read through the link. I've already seen Dr Oaklander's video - great stuff!