I have severe joint pain in my chest, ribs, knees and sometimes hips. I've been diagnosed with connective tissue disorder and fibromyalgia. This has been going on for 20 years. I noticed it is worse a few weeks before a reaction. I visted Mayo's Allergy clinic a few weeks ago and they also had me see rheumatology. It all came back as part of my mast cell activation syndrome and not connective tissue or fibro.

Hi, I have bad muscle fatigue, most in my upper body. It feels like I have been lifting weights and arms can't lift one more thing. Sometimes I feel like if I hold my hand out it will be shaky but I do and it doesn't shake. So I feel shakey sometimes too. Simple things like folding towels, holding a dinner plate are tiring. I have been diagnosed with Fibromyalgia. I haven't been diagnosed with a mast cell disease yet but I know I have one. My dermatologist suspects TMEP and I just had a tryptase test and I'm waiting for results.
Melissa

TMEP is a sub type of UP (Urticaria pigmentosa ). TMEP stands for
telangiectasia macularis eruptiva perstans. Telangiectasias are small dilated blood vessel close to the skins surface. Macularis, meaning macules. There isn't much info out there on it. Usually it doesn't itch, and in most causes it doesn't produce darier's sign when stroked.
Here is a link that describes it....

http://www.expertconsultbook.com/expertconsult/ob/book.do?method=display&type=bo...

Hi Chaco and everyone


I have muscule pain , fatigue , bone pain and muscule spasms .

My illess began with wobbly legs on stairs , having to hold on both sides . I prgrssed to back pain , which was / is constant and burning and abdominal pain on the upper right side .

many suggestions later , the docs drew a blank . I saw a rhumatologist the day after my first shock and he diagnosed fibromyalgia . Steriods help my musule pain , so that day I was in a andernaline lul - I get a break from my pain post shock for 24 hours .

After that it hits me .

I also experience my pain worstening in the run up to a shock . This , for me , seems to be trigger related . My legs also shake in the mornings before exertion when I am near shock

Now daily I have fatigue , pain in back and abdomen and shaky arems , legs , torso , eyes . When I am near shock I have pain and head shaking , eye shaking and bowel spasms .

I I can sit up without feeling dizzy / torso shaking I get out of bed , into my chair .

My legs always shake when I am settling to sleep and i lay on one hip , the other leg shakes . i can stop it by clenching my muscles , but it starts again . It also starts / gets worse if I am touched . if I let it do its stuff it will stop by itself . This can take up to an hour .

Any exetrion affects my legs and i will shake . I have to use a wheelchair after a bath / shower as the exertion = shaking .

Sussing my triggers has helped . I can have a bath without going blue now and I can hold my own weight for more than 1 min sat forward . Some days I can hold my legs up for a short period but this remains very difficult . I got a rise and routine chair because my legs were shaking if the hung down for any length of time .

My abdo shaky days are always with bone pain in my long bones and joints .

I am on strong pain killers now , which need to go as it is oxycodone and codine darivitives are mast cell activators . But my pain is ( in the majority ) controlled by comparision to where i was . I am wincing in pain when i breathe in at dose time - due to bowel swelling and my chest expanding and pressing on it

The pain i am describing is through oxycodone . I was put on it because I was in teeth gritting pain with every movement , inc breathing

I remain a challenge analgesia wise

I completely understand the pressure and skin sensitivity . I also at times have vibration sensitivity . I have a memory foam matress now . But on my old one , my partner moving would create vibration which ramped up my pain . so annoying when i was finally comfortable in the ideal pain killer half hour

Keeping well hydrated is the only way I have found to help my pain and shaking. head shaking for me is a sign of dehydration . I have no idea why than it is a fact for me

Cool baths help with the back pain

None of the fibro meds helped me . I was diagnosed with fibro at a very early point when my reactions weren't controlled . My abdo pain doesn't behave like fibro in that i get relief from laying on my painful side .

I have theory and it is exactly that .

Compliment protiens 3a 4a and 5a are known as anaphlatoxins . They cause :- sommoth muscule contraction and for our blood vessels to be porus causing swelling . They also degranulate mast cells .Histamine has the same effects

Musles like any other tissue can swell with histamine induced or compliment induced porus blood vessels which then leak fluid into out tissues .
This swelling causes out tissues to press on our nerves . also our lymph nodes fill with fluid , which also press on our nerves .
Our lungs also fill with low to high levels of fluid . This means we are not having as much oxygen get into our blood . Our muscles can work anerobically - without oxygen for a period of time - but lactic acid is produced - this causes cramps .
Our smooth muscles contract / spam with the effects of histamine and compliment - lung wall , stomach , bowel , bladder , uterus

wilipedia :-

Mast cells can be stimulated to degranulate by direct injury (e.g. physical or chemical [such as opioids, alcohols, and certain antibiotics such as polymyxins]), cross-linking of Immunoglobulin E (IgE) receptors, or by activated complement proteins.[2]

Prostaglandins - PG2 , another mast cell chemical . are known to contribulte to migraine states

PG2 :- Causes a contraction of the bronchial airways. The concentration of PGD2 in asthma-patients is 10 times higher than in control patients, especially after it is brought into contact with allergens.
   * Involved in the regulation of reducing body temperature in sleep, and acts opposite to prostaglandin E2.
   * Causes Vasodilation ( opening of boold vessels )

I am barely touching the tip of a large iceberg on this subject . But will continue reading

Mast cells spill both histamine and prostoglandins , all very useful in infection . But in us with too much of both and compliment in the mix . Post shock we could have continuing symptoms from vasdilation ( opned blood vessels = lower blood pressure and leaky blood vessels = swelling and pain .

I will keep hunting I hope this helps
Josie

Hi Joan ,

I am pleased good old -paracetamol - we call it may be helping me on several levels . I have been using it for base temperture control to help my sweats . I will continue with it

I think my pain is helped by my antihistamines in genral terms but my abdomen needs sorting as if this is better I could come off the serious alagesics . I tried recantly reducing a little , 5mg less over 24 hours and I was crying in pain at 48hrs.  So treating the cause is vital to me

I will ask my immuno about gastrocrom and also the supplents you have mentioned . I am familiar with quercitin . I have only olive oil so worked out flaviniods by myself I like probiotics and have them when I have antibiotics so they will not be hard for me to introduce daily

They mentioned gastrocrom last yr , but I think they wanted me on an ideal H1 and H2 combo first +singulair . To see if that would be sufficent . It has helped in several really good ways . My chest is generally less tight / wheezy and this is a source of EPI Pen level reactions . And I am flushing less from bowel histamine , but am still swollen and it still affects my blood pressure , which will be very up and down as a result . I am also having frequency and loose stools .

They should study me as I should be constipated to the eyeballs

I am hypoadrenal , they are not sure if it is longterm or due to steriod use alone . So yes , this contibutes to my fatigue . Our bodies are behaving , imminity wise , like we are constantly gravely ill so in some ways our fatigue is understandable , but still unbearable at times

I worked out a trigger in a med due to sudden fatigue . i couldn't hold my 6 month old niece as my arm muscles couldn't do it . It was a miniscule amount of caramel colouring in merformin syrup . I am anaphylactic to this in any more than tiny amounts . My background  antihiatamines saved it from being more concerning .

My local ED , paramedics and ED docs knew me on first name terms which is very scary but also reassuring as they didn't underestimate my anaphlactic abilities xxx

I am getting to know a new ED ; well i am new to them as a patient , but I used to work there . This was reassuring but on my first visit very hard as I can't work and it was showing me what I can't do now . I had also had a 16 week break from shock , so in that moment I felt back to square one . I knew in reality I wasn't that I and my meds have come a long way in protecting me . Id just had a little glimpse of feeling a little better day to day and felt it going , back to uncertinty of when I will next be visiting ED .

Once my infection settled I did

I completely agree with you about trying new stuff around docs . It had been very important to me ,

I am going to ask for a trial of tramadol without corn or gelatine , in clinic with the docs , as it may be a useful stepping stone in anagesic terms for me . I reacted to its extra ingredients .

hugs

Josie xxxxxxxxxxxxxxxxxx