Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Specific Mast Cell Conditions and Those that Mimic Them >> Question about MCD and Fibromyalgia http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1297839256 Message started by larken on 02/15/11 at 18:54:15

Title: Question about MCD and Fibromyalgia Post by larken on 02/15/11 at 18:54:15 I am wondering if anyone knows doctors or researchers who are building on Dr Blanco et al's study last year on the high level of spindle-shaped mast cells in the skin of fibro patients. I was diagnosed with fibro in 1997.  My symptoms are now much more in line with MCAD.  I'm not sure if I have both or was misdiagnosed earlier.   I read Lisa's post about Dr Blanco in Spain and his forced retirement by the government as a result of the financial crisis.  I am really surprised and upset that he is losing his job and that we may lose his expertise (and hope he can find someplace else to practice, if that is what he wants to do).   Does anyone know of studies building on his research or looking at other angles of the connection--perhaps a causative link--between mast cells and fibro?   Or, doctors who believe there is a connection? Thanks, Larken

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 02/16/11 at 04:04:28 I'm really interested in this as I was diagnosed with Fibro last year and I'm wondering if I was misdiagnosed as well. Melissa

Title: Re: Question about MCD and Fibromyalgia Post by DeborahW, Founder on 02/23/11 at 02:25:43 This Topic was moved here from Medicines by DeborahW, Founder.

Title: Re: Question about MCD and Fibromyalgia Post by Josie on 02/25/11 at 04:58:13 Hi Missy Bean and larken , I too have a fibro diagnosis . I also have my doubts about my diagnosis :-) as i was diagnosed earlier in my illness and all my symptoms have other explinations . Even my fibro friends have questioned my diagnosis . But I read Dr Blancos work with interest and look forward to seeing further work bringing it forward . I have considered that this is all fibro . Substance P , the neurotransmiter involved in fibromyalgia is having lots of work done on it . It has been found that patients with fibro ahve a extra nerve pathway which means signals can be misdirected . I am having a bit of a hard day so will come back to you soon :-) Ive got loads to say xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Josie

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 02/25/11 at 06:16:53 Josie, Could point me in the right direction to read some of Dr. Blancos work. My mother in-law has Fibro and I am now wondering if she has some kind of mast cell thing going on because she has so many food sensitivities and the reactions she has are so similar to what I hear people describe on here. I am just curious, I know there is all kinds of research stating different beliefs on what sets off Fibro and I have came across several that suggest a trauma or illness sets it off. I had a bad car accident at 18 and mono at 19. Did you guys have any kind of trauma or illness that happened to you and then shortly after symptoms of Fibro started? Melissa

Title: Re: Question about MCD and Fibromyalgia Post by Josie on 02/26/11 at 12:53:43 Hi malissa , The symptoms of fibromyalgia are in many ways similar to MCAS / MCAD . It is a diagnosis of exclusion . So all other rhumatology , neurological and immuno causes need to be excluded for it to be a true diagnosis . In my case I think I have a little fibro and angiodeama . My cause for angiodeama is not established yet . All autoimmune causes have been excluded . I may have a new type of heridatory angiodeama . have you been tested for this ??? So my cause for my swelling may be histamine or type 3 HAE . Ill know more from my immuno next week . I feel I have some fibro as I have had neck pains for many years which were treated happily with a massage and a night out :-) So pure stress for me . I was dignosed with fibro after 6 months of illness 2 days after my first shock . i was happily full of steriods and adrenaline so could move better than I had been with less pain that day . 2 weeks later my abdominal pain was very bad , my GP listened and reffered me on , so 2 weeks on he wasn't convinced . He was already suspecting "one of those funny syndromes where you react to alcohol " with my first shock .?? mastocytosis / mcas . But unf I had to move suddenly due to domestic violence and I had to leave his acre . A real set back for me in real terms . I had a ( hospital )doc say all my symptoms were anxiety . I was a little upset that day because they had ordered a psych review without my consent . because they couldn't find out why i was shaking and being sick . well they did - gastritis . I had been upset the week before on the first ward as i was left 2 hrs for anti sickness . The sister , when i told her my reasons , apologised but I didn't get an apology - anyway all in the past but so unfair and un necessary . Now I have other explinations for most of my symptoms . frequent urination - high BP , diabetes and prostoglandins . pain = swelling , poor temp control - hot - histamine retching - gastritis and bowel spasms shaking - muscle spasms and dehydration - due to untreated retching So I pace myself as I am told to do and have cool baths to help my back pain  . No fibro drugs helped . My fibro friends have questioned the diagnosis as well as i didnt fit with them  even in how my pain behaves :-) So I remain open minded . On reading DR Blancos work I wandered if many fibro patients are undiagnosed mastocyctosis /  so that is why they have extra mast cells . But that's me tipping it on its head . With early work like Dr Blanco's it shows things , but it really creates more questions to research :-) Where are you in the getting a diagnosis process ??? If you do have masto or mcas it is not beyond that your family also have it . many of us have strong family histories , the research just needs to catch up with us . I had a very stressful 6 months before my illness came out , culminating in taking a job in a well known fast food outlet for money as my sister was gambling . I do beleive this contributed to my illness coming out . I presented with sweats , fatigue and temperture . I had antibiotics and had pain in my liver and more sweats and shortness of breath on minimal exertion . I had a mild very mild chest infection . but i was very short of breath , now with knowledge , i suspect it was pollen ( summer ) and lots of kittens ( 11 inc big cats sleeping in my room ), personal care products ( short of breath in shower ) and bathroom cleaner which contributed to this first illness . In the months before I had had I migraine which took me to ED (jan ) abdo bloating and retching ( may ) . All mysterious malladies . I tolerated stress well before this . i was nursing for 15 yrs full time . I manged my stress as I said with hair dos , nights out and massages :-) My first epi pen experience was in Dec 08 , I had rose wine . flushed , red , had fast heart beat , dizzy and self presented at ED . i should ahve called an ambulance . But i got a lift . They saw me , got me into the resusitation room and treated me . I was very ill . BUT the treatment worked :-) I have had many experiences since then , shock , pain , operations , my bowel being so ill i was reacting to everything :-( So please ask away . Mono can make your immune system go bonkers without any true allergies where you have high IGE for that thing - mine are cats , house dust and grass pollen . Any physical ( operation , infection etc ) can un mask mast cell disease and angiodeama from other sources as all swelling is not necesserily mast cell based :-) hugs Josie

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 02/28/11 at 06:23:47 Josie, I got the fibro diagnoses in April of 2010 after a year and a half of seeing my Rhuemey. I had every dang test thinkable, she told me I was positive for all the trigger points so with that considered and process of elimination and my symptoms she felt that was the diagnoses of Fibro fit. I have the sleep problems fibro patients have frequent waking. She told me the different meds they use for fibro and she offered to prescribe them or if there was an antidepressant I had used before she would prescribe that. I had taken Wellbutrin before so she prescribed that. I'm not really sure if it helps or not, I have to say it helps with my anxiety and it helps me not to smoke a cigarette. I know bad stuff, I haven't smoked in a while but when I'm stressed I tend to want to sneak a puff here and there. I know bad, no lecturing. So the reason I question the diagnoses of fibro is when I avoid my triggers most of the symptoms are like 80% better. Still have the trigger points and the pain sensitivity so like if I barely bump into something it hurts when it shouldn't, sometimes it hurts just to hold me husbands hand.   As far as the masto diagnoses, still awaiting a firm diagnoses. I had a skin biopsy at a dermatologist and was told it was telangiectasia and it was caused by heat and he sent me on my way. I got a copy of the path report for myself and it showed that it also had a differential diagnoses of TMEP, so I saw another dermatologist for a second opinion and I believe she thought it was TMEP, she was real careful about what she said but she gave me a list of masto triggers and told me to stay away from my normal triggers and she has prescribed different meds including cromolyn which I just started. I asked the nurse, so does she think it is TMEP, and she said I think she wants to see how you respond to meds before she makes the final call. From what I understand about TMEP and what little information that is out there on the net is that it is a diagnoses that can not be made on lab results alone, clinical correlation is necessary and I believe it is pretty relevant that this some kind of mast cell thing. I have so many of the symptoms....Esophagitis, gastritis, IBS, olfactory hallucinations, chronic hives, heat induced hives, many food sensitivities, joint/muscle/bone pain, muscle fatigue, chemical sensitivities, multiple environmental allergies, too many to mention, I was allergic to like 65% of the trees, grasses, weeds, etc that they tested me for, and there is probably more I could list. For me I can look back at my teenage years and having symptoms, flushing and alcohol intolerance, sweating fits followed by extreme itching. At 19 I swear I was going through menopause and had massive hormone work ups. Not really much, was told I had PCOS. My appointment with the dermatologist is tomorrow and I'm wondering what she will say. What was your diagnoses or are you still in progress? Are you still able to work? Melissa

Title: Re: Question about MCD and Fibromyalgia Post by Josie on 02/28/11 at 10:31:01 Hi mellisa , Oh babe , I compleltly understand xxxxxxxxxxxxxxxxx My pain is mostly conrolled by oxycodone . I was in teeth gritting pain every day. My pain is also helped by less triggers . Masto wise - you need a more through work up . typtases , 24 hour urine collection for prostoglandins D2 , and a bone marrow biopsy , systemic mastocytosis can only be diagnosed by skin and or bone marrow biopsy to look at your mast cells there . It can also affect all the things you describe . Did you ahve an oesophageal camera or a colconoscopy if so your samples from that could be re examined with a mast cell problem of the bowel in mind . It is known as mastocyctic entrocollitis . Other conditions can have similar symptoms that need excluding . these are carciniod ( 5iiHA - 24 hour urine collection ideally by an oncologist as its a very slow growing and treatable cancer ) , pheaocrocythoma - catechlamines - epinepherine and nor epinepherire - 24 hr urine collection and heridatory angiodeama - compliment levels 1 , 3 ,4 . A full autoimmune work up is also needed to make sure your problems arent being made worse by these . mastocyctosis needs positive skin or bone marrow biopsy . But mast cell activation syndrome doesn't . as it about badly behaved normal mast cells . your true allergies may be triggering your other mast cells to join the party . Singulair may help your chest symptoms . it has helped mine :-) gastrocrom is a good drug , that can take about 6 weeks to compleltly work . so be aptient chick xxxxx I would ask Deb ( our leader xxxxxxxxxxxxxx ) about good immunologists that may be available for you to travel to . Your dermo is doing well but I suspect you are on the edge of her knowledge . taking time , as long as she treats you is a good thing as it means you will get the right diagnosis . She can order the tests i said about . A tryptase would be helpful as well as it can direct re mastocyctosis . I have a diagnosis of angiodeama , the nitty gritty is being sorted . I ahve been tested for pheao , carciniod , HAE , tyhroid , adrenal and renal autoimmune disease as a cause . Lupus again . all negative . So I may ahve HAE type 3 , new , and difficult to pin down . I am seeing my immuno tomorrow . So ill let you know how it goes . My tounge swells and my throat closes with a mix of swelling else were and blood pressure and pulse changes . I get wheezy . I flush regularly . I also ahve pale , sweaty , dizzy days , which I can help with anti histamines . What meds are you on ? I am in the same position as you foods wise . I am not going near , alcohol , vinigar , malt , caramel colour , malt o dextrin , sulphies in any form , gelatine , corn in any form , CT contrast , many meds , IGE allergies - cats , grass and house dust . Fibro drugs wise you need to avoid any tricyclic antidepressants - amitrypylline , nor tryptyline . I didnt do well ( hives , flushing and swelling ) on cymbalta . Our serotonin levels can be high or low but don't respond well to being messed with . Let me know how you go xxxxxxxxxxxxxxxxxxxx Josie

Title: Re: Question about MCD and Fibromyalgia Post by mikev on 02/28/11 at 10:45:48 Josie/Melissa: I too have symptoms in my skin sensitivity that are similar to fibro. My current GP, whose boss doc is a personal friend, is a rhumie & fibro guy subspeciality. He said he could not diagnose me as fibro because was too wide spread. That's when search went on until I found my allegist who did my tryptase test and found it inflated and gave me my SM diagnosis. Josie you right bumping into something can bring on pain that you almost come to tears. Touching can be very tough, what a terrible disease it is. Gastrocrom has helped some. Will be trying it w/ ketitofin soon as my sub comes in. To see if combo helps. Right now only tramadol gives relief and then just minor, as am Nasids intolerant & I do have it running in my family, grandma RA, Mom fibro-although I think she was misdiagnosed, daughter RA. Mine mainly in my feet which was the first part before went systemic, now my arms. & have a few triggers but mine seems to be more the filling the bucket. I would be shocked that if they didn't check further into fibro that's is roots are not in mast cells. MikeV

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 02/28/11 at 12:39:06 Josie- I do agree I need more of a masto work up. I did have a tryptase test, it came back 3.4. So that's good, I know I have a lot to learn but usually if it is systemic masto my tryptase level would probably be higher correct? I do believe my dermatologist's knowledge is probably limited. I have some info that was passed on to me about mast cell activation syndrome. I will be taking it with me and hopefully the doctor won't be offended if I give it to her. So really depending on what she says as far as diagnoses will depend on where I go next. If she does confirm TMEP then I know I need to find either a real good internal medicine doctor and an allergist/immunologist. I do have an immunologist I have seen a few times in Seattle, and he is supposed to be one of the best, but he didn't even know what TMEP was. I don't want to be to critical because it is a rare thing. But I did get a name of a doctor from some people in The Mast Cell support group for the Pacific Northwest. I have had the carcinoid 24 hour urine test, I remember seeing work up's for CH50,CH100, C3, C4, ESR, CRP, CPK and Aldolase, Anti-Neutrophil Cytoplasmic AB full panel, Qual. Cryoglobulins, RA factor, ANA, Lupus panel, adrenal testing. The only thing that has come back positive is thyroid, I'm hypothyroid and the anticardiolipin(from lupus panel) has come back positive 3 times, but no lupus. RA factor was borderline, but they said it's not important. Autoimmune disease run in my family, my mom has three. So sometimes it scares me a little. I had a colonoscopy and a endoscopy. They took samples during both but during the endoscopy he only took them for celiac, which was stupid because I had been gluten free for 7 months. He said I had some erosion at the GE Junction and esophageal inflammation, and gastritis Colonoscopy came back as IBS. I'm so glad I didn't try the amitriptyline, I had a bad feeling in my gut. I had a friend on cymbalta and she went through withdrawls coming off that med, so I said no way. Right now I'm taking Zyrtec, generic zantac, cromolyn, and hydroxyzine and I have a prescription for singular ready to go. Where do live Josie? Melissa

Title: Re: Question about MCD and Fibromyalgia Post by Josie on 03/01/11 at 02:02:31 Hi Mellisa . I live in England , in Bristol a city in the south west . I am glad you are being worked up . Even if they only looked for celiecs they maybe able to re examine them with mast cells in mind :-) . A normal trptases is seen a a completelrule out for mastcytosis . But masto can be present in very are cases ( Lisa ) But many of us has negative trptase with full symptoms . This suggest either :- another cause for our symptoms or that we are not having constant raises but momentry ones during an attack we haven't caught yet :-) Outside masto , only 30% od anaphylaxis shows tryptase rises , even in ppl who are dead due to shock . so typtase is a useful if its positive not useful otherwise kind of test :-) There are some good vids on you tube , which demonstarate things :-) mast cell activation symptomology . Autoimmune diease feels scary . the thing to remember is that treatment for all autoimmune diseases is getting better . :-) You mum has lived through a time with minimal treatments . Hypothyroid , in particaular hashimotos thyroidosis is a condition known to give extra compliment cascades , which makes you at risk of serious reactions . You should ask about thyroid pyroxidase antibodies . It may be in the tests done :-)   My appointment turned out to be a hello appt , which was ok , but I need action . feeling a bit ............... just now . I am getting my ambulance calls tp prove my airway compromise . yeah . thats about it for now :-( Go for the singulair I love it and it has helped me a great deal :-) Hugs Jose

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 03/01/11 at 04:18:11 Thyroid antibodies huh? You know whats weird is my mom, grandma and I all had  thyroid goiters around the same age........our late 20's. We all have had a half of our thyroid removed.   I really would like to know what caused that, no one has ever really explained to me, I was just told I need to take thyroid replacement. One thing that is frustrated is no one will give me answers on why my hair is thinning, that started in 2004. Every year I feel like it's getting worse and worse.  No doctor can give me an answer. Both my parents and grandparents have thick hair, the men bald in their 50's. But mom and grandma.....full head of hair. I know in thyroid issues can cause thinning of hair but my numbers are good. ????? I'm sorry your appointment didn't really give more answers. That can be so frustrating. Today is my appointment and I hope I can get some answers. I will let you know how it goes. Melissa

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 03/01/11 at 04:44:28 Josie, I was thinking about your question about some other doctors continuing and building on Dr. Blancos research. There is a Pacific Northwest mast cell support group conference later this spring and I believe Dr. Overman who is a rheumatologist and co-wrote the book.... You Don’t LOOK Sick! Living Well With Invisible Chronic Illness is supposed to be a speaker at the conference and I believe will be speaking about Fibro. I will ask him about the spindle cell thing. I'll see what he has to say. Melissa

Title: Re: Question about MCD and Fibromyalgia Post by larken on 03/01/11 at 08:42:36 Hi Melissa, I'm so glad to hear that another doctor is possibly researching fibro and mast cells.  I would love to hear what he has to say.  Please post if you are able to talk with him!   I am talking with my doctor here in the Netherlands later this week and I hope he will speak with Dr. Blanco.  I'll let you know what he says about the spindle-shaped cells.   Larken

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 03/01/11 at 09:01:12 I'm sorry Larken, I meant to address that to you. Brain Fog. Did you have spindle cells in your skin biopsy too? I remember mine mentioning spindle cells. I will post anything I find out. The conference isn't till the end of April. Did you get a masto diagnoses yet? Melissa

Title: Re: Question about MCD and Fibromyalgia Post by Josie on 03/01/11 at 10:55:34 Hi Mellisa , Thinning hair can be caused by 2 conditions , if it is thining at the hairline . The first is cushings syndrome - this is a steriod overproduction syndrome. if you have depression as well then this may be possible . A serum cortisol at 9 am will show your natural steriod level and other tests can be ordered on the basis of that . If you are on steriods it may be a side effect . you grow hair were you don't want it and not were you do :-) This can originate from the adrenal glands or the pituatry gland . Given the throid history a check of you piuatry hormones would be useful :-) as the pituatry controls both so problems can be connected . Goitres can have high or low thyroid , so they took half away , for comfort and or better balance of chemicals and now you have to take replacement thyriod hormone as what is left behind isnt producing enough . You should watch yourself for low thyroid symptoms and high . As what is left can either stop working completley in which case you will need more thyroxine . Or it may get over excited again . hashimotos thyroidosis ( low thyroid / hypothyroid ) is a cause ( the antibodies I mentioned ) and is the autoimmune cause . It is also caused by iodine depeletion . There ia also a genetic low thyroid condition which is assocaited with goitre but you would expect symptoms before your early 20's . First presentaions with thyroid problems are often high throid levels as they peak as they are struggling before they give up altogether . This is common after childbirth . In broad terms high thyroid is over active everything and low is underactive everything . High :- anxiety , weightloss despite increased appietite , fast heart beat , poppy eyes Low :- depression weight gain , slow heart beat , low blood pressure Thyrods and adrenals - ( steriods , sex hormones , blood pressure control ) are closely linked so a check on both is ideal and an endocrinologist to interpret results as there are lots of feedback loops which they get !!!!!!!!!!!!!!!!!!!!!!!!!!!! beware of a doc who says , im not an endocrinologist but I want to give you this or that hormone xxxx The other cause of hair thinning is poly cystic overian syndrome . This is because it messes with your cortisol production by another means . It is treatable :-) Both thyriod and adrenal conditions cause fatigue and pain . so you may already have an explination for those . xxxxxxxxx I hope today brings some answers :-) I am plodding on today being a blip to be sorted xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Josie

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 03/01/11 at 15:21:17 You know by the way, I always wondered if there was an adrenal thing going on. At 19 I had a bunch of blood work because I have had increasing facial hair and awful sweating fits, adult acne(never had pimples as a teenager)I thought I was going through menopause. The blood work came back as elevated DHEA and elevated testosterone. They said DHEA is produced by the adrenals and they did an ultrasound to check for a tumor on the adrenal gland and also to check the ovaries for cysts. No tumor no cysts, had regular periods so they didn't think it was PCOS. Never got and answer they just prescribed spironolactone to lessen the male androgens and birthcontrol. About 5 years later had this all investigated again this time by an endo doc and they did all kinds of tests including one where they give me a shot of prolactin and I came back in an hour and have my blood checked, anyways the test was done wrong by the lab and the doctor said rather than make me do the test again she really believed it was PCOS and that insulin resistance comes with that. I have heard PCOS causes thinning of hair but I was told if I lose weight it will get better. I dropped 50lbs and it never did get better. Now I still have to lose weight again because I'm still packing the weight I gained from the last baby. Who knows maybe it will just take time for the hormones to adjust, I should be more patient. Sometimes, I just wish I could be normal and not have all these issues. The only good thing out of this is I have become very good at waxing, I wax a lot of my friends. Lol! Melissa

Title: Re: Question about MCD and Fibromyalgia Post by Josie on 03/02/11 at 03:58:27 Hi Mellisa ,     They seem to ahve tested your adrenals and overies . i think you need the pituatry tests . You would also be good ahving the 24 hour urine collection for a pheaocryocythoma . it is what they scanned for . it can cause trouble that mimics anaphylaxis / masto.  The collection test is most useful other than CT . But CT contrast is best avoided by any mast cell patient xx as it degraualtes mast cells . The pheao is a ( in the very large majority ) benign tumor which can be removed :-) You need the test repeated that they didn't complete as this is the test for pituatry function . hugs Jose

Title: Re: Question about MCD and Fibromyalgia Post by larken on 03/04/11 at 13:33:59 Hi Melissa, I definitely don't have masto, but I am pretty sure I have MCAD, though my doctor refuses to treat me for that (please see my post from a few minutes ago in the general MCD folder).   He also refuses to do a skin biopsy for spindle-shaped mast cells.  Yeah, a real winner!  Time to find a new doc.  This one absolutely won't think outside the box.   I'll definitely look forward to hearing reports from the conference in April!   Larken

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 03/04/11 at 16:01:59 I'm sorry Larken. I totally understand and have been there. I had generally had better luck with a female doctors. Out of all the different specialists I saw.....3 of them stood out....all female, and 2 of them were in their mid to late thirties. I think because they haven't been doctors for to long they aren't as arrogant and are more willing to think outside the box and are a little more excited about trying to figure out harder to solve cases. Just my opinion, I'm sure offers might disagree. Larken, I even did a case study at the local university and saw supposedly the best dermatologists in my area. 30 plus doctors came in and the young female interns showed the most interest. The older male doctors just looked at my spots real quick and seemed to not think much of them. I know their are great doctors with 30+ years experience but sometimes it's hard to find one. You know many doctors will do interviews, you could call ahead and ask if they will do like a 10 minute consult and explain your case and it's rareness and tell them your really looking for someone who is going to think outside the box and at least look at your symptoms as a whole and consider that just MAYBE they could be related, you have been through so much and you really need a doctor to take your symptoms seriously, and it's it important for you to get the correct diagnose so you can be properly monitored and properly medicated. Tell the next doc that and see what they say, I bet you might get a more help. Seriously try a female doc next. Send me questions I should ask at the conference, I'm not sure how it works but if we can ask questions I have some in mind. Melissa

Title: Re: Question about MCD and Fibromyalgia Post by Sandi on 03/05/11 at 06:43:11 Hi Larken, just wanted to quickly comment I was diagnosed fibro in the late 80's. I also have hypothyroid, and adrenal issues, and female issues. I finally tolearate a thyroid medication, i had given up for years, am on natural progesterone, and I have to say the greatest thing that helped my fibro was food elimination. Holy cow what a difference. If I "retest" dairy or say wheat, that night/day I am back to high pain. Nutrasweet was a another huge one for severe bone pain, now it'd trigger me to anaphalaxsis probably. I take a mag/potassium supplement for my adrenals, gave up on exploring, my lifestyle was insane for my adrenals, grandparents sick, young children, homeschooling and running a business, of course my adrenals were taxed! For some reason I really dump potassium so I have to keep it in line with sodium intake. I did give up on adrenal supplementations  I just rejected too many of them. I've learned to say no and hope my adrenals are recovering! Anyway just wanted to pipe in on the food/ and pain issues, it really was unbelievable the difference, it took quite a few months for it to lessen, but now that I am off if I have something bam it's that day the bone/skin pain is back. I'd probably still be positive for fibro, I'm sure my trigger points are still pretty positive, if someone comes up to say hello and grabs your arm excitedly and "applies pressure" that still will hurt for 20 minutes after. But I do not lay in bed all night throbbing, and for that I am so grateful! On the off hand subject! A good pair of orthotics and shoes also changed my life with bone/hip pain. I really hate ugly shoes, but I started getting these cysts in my hands and feet, mortons neuroma, spurs and my hips were in constant agony. I was going to get straightened constantly. Well the cysts and metatarsaligia, and spurs and hip pain wouldn't stop I took the plunge and WOW, so finally finding a orthotic I didn't react to :) and a shoe and I try now to make newbalance look amazing :)   On your MCAD issue may I suggest while you are seeking the correct doc, try treating with antihistamines yourself to see if there is a difference. You may already be doing that, I've got to look on your other posts! That is what I am doing, luckily my current MD is on board with me, he's known me for a long time and my issues and said this fits, we've weight all other options, and the fact I respond well  to antihistimines is a clue we are onto something. On your angioedema, I've told docs I am a human pufferfish, it is ridiculous  I can literally be wearing a pair of pants that are baggy and after not feeling well can put them on and not get them buttoned. It's insane

Title: Re: Question about MCD and Fibromyalgia Post by Josie on 03/05/11 at 09:43:47 Hi Sandi , I understand the human pufferfish. my abdomen is always a little bloated ( 36 ins ) but when i swell I measure 56 ins around my waist . my hips are a uk 16 (20 ??? with you ) . So I have given up on normal cuts and am now wearing maternity ranges . I don't care . i am comfortable :-) Swelling bring bowel spams and these cause loose stools and diarrhoea and sometimes vomiting if they spasm back to my stomach . Sometimes its just my stomach spasming . This happened this morning . i ate , then I knew . too late for anti sickness .vomit ,  then half hr later i can tolerate meds and water . I am on strong painkillers because of my bowel swelling and I dont need any apierients - senna , lactulose , sodium docucstae etc xxx My GP keeps asking do I need them . No thanks :-) For my adrenals I am tolerating hydrocortisone syryp 10mg a day . My adrenals have completley failed at the moment , so this is a maintance dose , the same as you body makes every day :-) I am also diagnosed with fibromaylgia . It was an early diagnosis in all this so im open minded about it :-) hugs Josie

Title: Re: Question about MCD and Fibromyalgia Post by missybean on 03/05/11 at 16:07:59 How do you guys know your adrenals are fatigued. Is there certain signs? Or did you get certain tests preformed? Oh also, I came across an article the other day about a link between low progesterone and fibromyalgia, and how when the patients where given progesterone and their symptoms of fibro disappeared. You guys heard of that before? I know I have low progesterone, I have in the past. Melissa

Title: Re: Question about MCD and Fibromyalgia Post by Josie on 03/06/11 at 02:12:26 Hi mel , My adrenals are not fatigued , theyve packed up and gone . It may be secondery to long term steriods , but it normally needs to be yrs . My tests for autoimmune addisions ( low adrenal function ) have been negative , but my adrenals remain shut down anyway . I am seeing an endocrinologist for this and my diabetes soon so ill know more then . Adrenal fatigue is hard to prove , long term stress an lead to chronic stress and symptoms similiar to low adrenal function - depression ( crying when not feeling sad , fatigue , muscule pain , pyrexias , regular infections . But true adrenal shut down is shown on a 9am cortisol level with very little being produced and backed up with an adrenal stimulation test . In our case I think the pituatry tests would be useful with you whole picture . An endocrinologist is the specialty of choice in this situation :-) hugs Josie

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