Hi everyone.  I posted a few times the other month, though by now I can't remember what I said!  I don't know yet whether I have masto, and with current UK referral rates I reckon it'll be a year before I'm in the hands of an appropriate specialist.  Here's roughly where I am:

* Severe ME/CFS for 16 years - don't think there's any doubt about that diagnosis.
* POTS - in the throes of trying to get to the right specialist, but we're about 90% sure I have either that or something similar like NMH.  This particular specialist will hopefully be able to get me investigated for mast cell problems as well.
* Dermographism - diagnosed a few years ago.  Dermatologist I saw about it recently was useless, though told me to go on combi antihistamines.  I also have an increasing number of small brown lesions on my skin, which they claimed were warts of some sort, although I think they may have been mixing them up with other skin problems I have (flat brown markings vs. raised skin tags with no pigmentation difference), plus they didn't examine me all that thoroughly and did mention that they couldn't identify one brown marking on my skin (which seems to go red when rubbed, though to be honest it's hard to tell, I'm not sure how much pressure to use etc.).
* Interstitial cystitis - somewhat foggy diagnosis by my gynaecologist a few years ago.  Not too bad these days.
* IBS - hah, I sometimes think they just slap that label on you when they can't be bothered to investigate your GI problems.  It's usual with ME anyway.
* Vulvodynia - for the last few years; gynae seems to have run out of ideas.  Flares up before and during my period.
* Menstrual migraine and PMS - migraine goes back to 1993, PMS to 2007.
* Assorted problems with outbreaks of itching, breathlessness, red dots on skin, sweating, dizziness, tinnitus, blackouts, falls and so forth, triggered by things like eating or standing up - hmm, this one's been creeping up on me gradually, though it's been markedly worse since I had my gallbladder out in March 2012.  No diagnosis yet, the doctors just keep putting me on more antihistamines without actually investigating anything.

Anyway, I went on the combi antihistamines (alimemazine and cetirizine) in August 2012.  I'd tried them separately, but together they had the very happy effect of pretty much knocking out the vulvodynia.  No idea why, and my gynae had never heard of this either.

I had a very strong reaction to lunch a few months ago, mimicking an allergic reaction apart from the snag that I've been fine with all those foods before and since.  That's when a doctor put me on cimetidine.  There's a small study somewhere showing that it can be effective for curing calcific tendinitis in shoulder joints, and I have that too, so we kept me on it to see what would happen.

Since the gallbladder surgery ten months ago, I've been unable to take opioids because they cause intense abdominal pain that mimics a gallbladder attack.  This seems to be known about, there's a line in the cocodamol leaflet about "do not take after gallbladder surgery" (guess what the hospital put me on), but we haven't found further details.  Until recently, I managed to get around it by taking the tablets with food.  I only take them occasionally, not daily.

Over the last few weeks, I've been having a lot of problems with abdominal pain.  I've found that even if I take the cocodamol with food, the post-surgical pain would hit me sooner or later, and it's extreme.  And then I was just getting general abdominal pain, even if I hadn't taken any painkillers.  So at that point my doctors told me to go back on the higher dose of cimetidine (I'd been on the lower dose), and after that added in omeprazole, which I've been on for about five days.

Two main things I've been noticing here.  One is that when I'm on cimetidine, my breasts are bigger.  Apparently this is a known side effect - in men!  I'm guessing this is the usual sexism you tend to find in the medical world, that no one has bothered about the side effects in women as much.  I don't mind the size increase, but the premenstrual breast pain I got last cycle was pretty damned nasty, I had to go on very strong painkillers for it, and then of course the wretched painkillers attacked my stomach, so that didn't go well at all.  Plus my GP has pointed out that breast pain tends to go with premenstrual anxiety attacks, it's the same hormonal thing, and I certainly don't want that being ramped up.

The other thing is that the vulvodynia has flared up again over the last few days, the first time it's been bad since August, and it's getting pretty nasty.  And now I have no usable pain relief at all.

So far I've observed that:

1. Combination antihistamines (cetirizine and alimemazine) improved the vulvodynia.
2. Cimetidine made my breasts larger and more painful.
3. Omeprazole and/or a larger dose of cimetidine may be making the vulvodynia flare up - bit too early to jump to conclusions on that one.

Does anyone know about how antihistamines and such affect hormones?  Evidently they're doing something!

Next question, does anyone know how this works if you a) do have a mast cell problem, and b) don't have a mast cell problem?  Since right now we're only guessing that I have a mast cell problem, after all.

I should mention now that I disable smilies, so I'd appreciate it if folks could leave them out, because this forum replaces them with words and it can be confusing.

Thanks!

1. Good to know.

2. We call it tramadol too, though I think the Americans call it Ultram most of the time.  I do have some, it's generally my back-up if the cocodamol isn't strong enough.  I'm not that keen on it as it tends to keep me awake and make me incredibly nauseous.  I kind of assumed I'd have the same problems with it that I have with cocodamol, since it's more or less an opioid.  It's been hard to find out, and with the reactions I've been having, I haven't fancied experimenting.

I have to remind myself that paracetamol isn't sugar pills too.  Thoroughly dangerous sugar pills.  Low effectiveness, high toxicity: what more do you need from a painkiller, really?

3. How does this not-safeness manifest itself, out of curiosity?

4. A fair number of those symptoms do occur with POTS or ME, yes, and to be honest, I get the impression that anything goes with it comes to ME - which will be one reason why the misdiagnosis rate is so high, of course.  Dermographism isn't a part of either syndrom that I know of.  The dermatologist I saw last time was not terribly helpful on the topic of the dermographism, kept on insisting that it doesn't cause itching.  If its only symptom was to give me red welts if there's pressure on my skin, why would I be all that bothered and seeking treatment?!  Anyway, the specialist we are trying to get me referred to (she's outwith my area so it's complicated) is a leading expert in ME and POTS, and meant to be excellent at working out what other conditions might be there (e.g. EDS, that seems to be coming up an awful lot these days for something so rare - I don't have it but my cousin does) and referring people on appropriately.  But first of all we have to find a local cardiologist who will refer me onto her, and it usually takes around 4 months per referral, so seeing someone who actually knows about mast cell stuff is probably three specialists away by now.  At least I'm not still collapsing and being taken to A&E like I was in August, as the hospital had absolutely no idea what to do with me.

5. Surgery wasn't the only stress, either.  There were various fun things going on before and afterwards, of which the most notable was my then-partner leaving me in August when I was really, really ill.  I do wish the doctors had run all the tests like the 24 hour ECG back in August, they'd have got far more useful results.  That said, I did at least manage to fall over (I don't actually faint, I get pre-syncope and then fall without losing consciousness) during the 24 hour ECG they ran at the start of December, so hopefully something will have shown up.

6. Good point, I'll ask.  I'm so used to side effects and being unable to tolerate a drug that breast pain seemed a small price to pay, but you're quite right, there are other options.

My support worker dropped off a urine sample for me at the doctor's today, as I've also been getting some symptoms in the bladder area.  Honestly, everything in my lower torso is throwing a hissyfit right now.  2-3 days to get the results, apparently.  Meanwhile I'm left with, well, paracetamol.  Also ibuprofen, which I've been told it might be safe to try after a good few days of omeprazole, but I don't think I have the courage, considering how viciously ibuprofen has attacked me in the past.

I'm starting to feel that I'm taking so many pills I rattle, so I've gone through my meds boxes for the week and taken out the vitamin/mineral supplements.  I wasn't on anything too exciting, but it did add up a bit.  I was also on quercetin, since I'd heard it recommended a lot and it sounded safe to try, but I've taken that out too.  May as well play safe.

Some people with mast cell disorders are able to take ibuprofen, aspirin, and/or opiods.  I can't take the first two because one manifestion of my mast cell disorder is that my blood is thin.  I can't take anything that makes it thinner or I get major problems with bleeding and dizziness.  Before I suggested tramadol to my GYN (based on this forum), she gave me a prescription for Lortab (hydrocodone plus paracetamol).  It didn't work very well for me... even though it's supposed to be stronger than tramadol... in fact, it made me feel like I had the flu--achy all over, short of breath, and struggling to stay awake.  NOT GOOD.  Tramadol makes me feel like I have insects crawling under my skin (which makes it difficult to sleep, obviously), but it does work for the pain and doesn't have any other... more serious... side effects.  The "crawling" feeling is not a mast cell symptom (it doesn't go away with antihistamines)... it has something to with the stimulation of nerve endings.  I forget exactly how it works.  A mast cell researcher told me the only safe medications for me were paracetamol, tramadol, and if I'm in the hospital and really desperate... dilaudid.  That's it.  So... I don't have much choice.

Heather

Starflower wrote on 01/28/13 at 07:15:36:


This is where it's fun that I have ME/CFS: I get to feel like that on a regular basis, sometimes from something like having a shower or generally overdoing it, and sometimes just from standing up.

Oh well, hopefully that specialist I'm trying to get to knows enough about ME/CFS and similar conditions to be able to tease apart which condition could be causing which problems.  But it's going to be quite a long time until I get to see her, and I need to manage my symptoms in the meanwhile without having a diagnosis.

I have been eating more nuts and chocolate recently, now you mention it.  I don't want to do a mammoth exclusion diet just now, it's not a good time for something on that scale, but I might try cutting out nuts and chocolate and see how I do.  Of course, I've been craving them!  Green leafy veggies are also meant to be high oxalate, aren't they?  My problem is that I'm vegan, and it sounds like a low oxalate diet is very difficult if you're vegan.

I'm just looking at a list of anaphylaxis symptoms on a UK website http://www.anaphylaxis.org.uk/what-is-anaphylaxis/signs-and-symptoms.

*  generalised flushing of the skin - not sure, I'm in no state to look most of the time.  I feel overheated and start pouring with sweat, so flushing is quite likely
*  nettle rash (hives) anywhere on the body - on one notable occasion.  Itchiness, on the other hand, almost every time.
*  sense of impending doom - not really.  Is that not more of a psychological reaction to being in a frightening, dangerous situation?
*  swelling of throat and mouth - no
*  difficulty in swallowing or speaking - swallowing no, speaking yes but that's if I've collapsed badly and am too exhausted to move, which is uncommon
*  alterations in heart rate - yes, tachycardia
*  severe asthma - no if they mean diagnosed asthma, but I do have difficulty breathing during these episodes
*  abdominal pain, nausea and vomiting - ab pain sometimes, nausea yes, vomiting no
*  sudden feeling of weakness (drop in blood pressure) - yes to both.  Actually, my blood pressure goes all over the place during these episodes, but it gets low at some point
*  collapse and unconsciousness - collapse fairly often, unconsciousness no

I thought anaphylaxis was about your lips swelling up and so forth?