Hi Ramona,

I personally think fibromyalgia is mostly a wastebasket diagnosis, where they put the people they can't figure out. It does help some to have a name they can put to their pain, but there is not a lot they can do to relieve it, and for some, it prevents looking into what the real cause is.

I'm not a doctor or nurse, but I do work in a doctor's office doing medical research. We work primarily with people who are very sick, that no one can figure out. I've seen a variety of ways the immune system can go haywire, though I am just learning about what mast cells can do.

I hope they figure out what is going on for you, soon. It may be you have multiple things going on, which muddies the picture. I'm glad you are moving ahead with getting testing, even though it isn't quite what you were originally hoping for.

I know a number of people who have low IgG subclasses, and they almost all find IgG infusions are extremely helpful. There may be complications for you with the masto, but most of them are very reactive to all kinds of things as well. You would need to start at MUCH lower doses than usually given, as IgG infusions can trigger activation in your immune system. You may not end up going down that path, but if so, be sure to go SLOW.

So sad to hear the stories with families. I have a large family, and it is split. Part of them have told me I am just whining for attention, and to come back to see them when I grow up. This is what I was told when I was going into the hospital to have a PICC line inserted for IV antibiotics for the infection in my brain. It was very painful to find the same brothers and sisters that I have taken in to my own home when they were down and out, have turned their backs on me, because it makes THEM feel too bad to hear how I am doing. Eye opening, in a painful way. Like Josie, I have distanced myself from them to protect myself.

Hi Susan,

There is research that is showing that mast cells are involved in fibromyalgia.  Still, you are right that it's often diagnosed when other answers can't be found.  If you Google "fibromyalgia mast cells", there are some interesting articles.

Hi Ramona

I hope you are recovering .

I ahd some thoughts about your bloods . I agree with Jilly that a heamotologist would be wise

I also think that an endocrinologist may be good as your low thyriod levels and sodium may indicate addisiions . They work together the adrenals and thyroid . A work up for hashimotos thyroiditis , ( low thyroid ) which is an autoimmune condition would explain the thyroid issues . tests - free T3 T4 and thyroid pyroxidase enzymes will show this .
Hashi's happens more commonly in patients with IA than in the general population . This is felt to be due to the increased compliment cascades ( inate immunity ) . Replacement with leveothyroxine will work when thyroid is failing . I will find out the TSH ( free T3 ) level under which treatment is advised.

A 9 am cortisol will establish what your adrenals are doing . They may be switched off at the moment due to the steriods . Then a test at 5mg is advised as the adrenals should be working again at this point .

Addisions ( low ) can be an autoimmune primary disease or secondery to long term steriod use . You pointed out to me that my adrenals are unlikely to be switched off due to steriods as it had not been long enough and Dr Grattan here agreed with you He tested me for autoimmune addisions - adrenal antibodies - which was negative . So I ahve another idiopathic condition
Most ppl have one or the other .

A short snacten test , with ACTH ( synthetic ) will stimulate the adrenals and see what they do ( bloods at 30 min intervals for 2 hrs ) . if you arenals respond , you know they will come back on line in time .

In the meantime , you will need 5-10mg of prednislaone a day . This is equivelent to your natural production . You will also need more 5-10mg in infection / other illness as you will ahve no stress response .You need cortisol dayly and in illness

Low IGG and hashi's and or adrenal insuffiency would explain your infections rate .

Your white cell count indicates an infection , maybe your recurrent UTI or ( I don't know if you ahve had an OGD - oesophegeal , gastric , dueodenal camera ) or have been tested for h pylori . H pylori is known as a risk factor in angiodeama ( Dr Grattan 2005 ) .

Your HB may be due to concentration with plasma loss into the tissues so a repeat will shed light there .

Your total protien and albulmin are not surprising either in the context of anaphylaxis as these are lost through the porus blood vessels - an effect of histamine in shock . Wether IV albumin would be a useful way forward would be a decision for a heamotologist . Steriods do not work for heridatory angiodeama , so the fact steriod work for you , essensially rules this out . The test is C1 esterase inhibitor , c3 and c4 ( compliments ) . This excludes type 1 and 2 . there is a 3rd oestrogen related type , but it would be expected to improve at menopause . There is an article on it in the mimicing section . I don't think its you I think your low albumin is secondery to your shocks .

I hope this helps many hugs
Jose

Hi Joan,

Interesting that mast cells may be associated with fibromyalgia. I work in a doctor's office where we see many people with fibro who actually have some specific cause for their pain and other symptoms, but the doctor who diagnosed them with fibromyalgia just couldn't be bothered to find the cause and treat it. That is why I call it a wastebasket diagnosis, something convenient for certain lazy doctors.

Once those patients come to our practice and have the cause determined, their pain can be treated, and sometimes eliminated. Not everyone, but many. It makes me sad to think about those who just live with their diagnosis, when they could be seeing improvement in their lives.

Hi Ramona,
Just a couple of other thoughts.  Long term steroid use has the potential to cause immunosuppression.  During such times, people can pick up an infection, and be unable to clear it if they were on steroids for awhile.  That might also be a possible consideration as to why your blood counts are a little messed up right now. That high neutrophil count is what caught my eye.  Neutrophils are your first line defender against infection. You might be harboring a buga-a-boo/virus.  

This is so easy to do when the weather is so up and down as it has been and people are getting sick.  I think springtime colds are the worst for this reason! People go out in public, even when they are sick, because the weather is nice and they are tired of being inside, and as a result, spread the germs around more easily.

Also, steroids can mess with your other hormone levels and activity.  They tend to amplfy drug effects too.  Steroids are very powerful medications.  Used for the right purpose at the right time, they can be a life-saver. However, they also have side effects, so they have to be used with caution, monitoring and control if used for longer periods of time.

I think it is a good place to start to see a hematologist.  You can ask as well as to if you should have an endocrine consult.  With your diabetes, it is probably a good thing to do now and then anyway.  I think you need to find a medication regimine that works well for you and will keep things in balance.

A repeat blood analysis, once you are off your steroids for a bit, might give a clearer picture of your natural baseline.  That is what they would want to see, how that has changed.

Mizz Ramona! You are not going to get that one past us!!! You cannot use your car, you are using the ambulance to get your gluteus to the hospital because you are in anaphalaxis... you cannot drive yourself! For your own safety and the safety of others, it'd be worse that drunk driving and if you crashed they'd have no idea you were in shock!! You will not drive yourself you hear woman!!! The hospital may have some way to get you home!