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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Agonizing cramps http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1297122895 Message started by Starflower on 02/07/11 at 11:54:55

Title: Agonizing cramps
Post by Starflower on 02/07/11 at 11:54:55

I can't believe I'm giving you an update on this after just 19 DAYS :'(

The cramps started this afternoon around 1:00. First I took two Tylenol. That helped for a while. Around 3:00 the cramps returned... I took a Lortab (I know it's a degranulator, but I'm desperate here!!) along with 50mg of liquid Benadryl. I didn't make me sleepy (or sick), but it didn't get rid of the pain either... it was like I took a sugar pill >:( At 6:00 I decided to try my gynecologist's advice and take a second Lortab. Now I am in LA LA LAND :D The pain is not entirely gone (!!!), but I don't care about it so much... I guess that's better than nothing.

This is so weird! I've never been really sensitive to medications, but I've also never had a problem getting relief from the "normal" dose. Has anyone else experienced this??

Heather

Title: Re: Agonizing cramps
Post by Lisa on 02/07/11 at 14:00:19

I'm sorry Heather for your pain! No, I don't have major pain issues except with migraines.

Again, I suggest Buscopan! It won't dope you because it works on the smooth muscles that are doing the cramping, not on trying to deaden your nerves. Big difference as far as pain management.

Sorry again to hear about this sweety!! I hope you get better soon!
:-*

Title: Re: Agonizing cramps
Post by DeborahW, Founder on 02/07/11 at 15:33:10

Can't rememer: Are you able to take Motrin? They work like magic for me!

Title: Re: Agonizing cramps
Post by Starflower on 02/07/11 at 16:02:41

I don't know. I used to do fine with ibuprofen, but I haven't tried it since 2008 (before I knew I had a mast cell disorder). It doesn't seem like a good idea to experiment... NSAIDs promote bleeding :(

Heather

Title: Re: Agonizing cramps
Post by In2butterflyz on 02/07/11 at 16:05:56

I’m sorry to hear that you are in so much pain again Heather :( I hope you get things figured out soon!!
Motrin is the only pain med I can take

Take Care,
Tracey

Title: Re: Agonizing cramps
Post by Starflower on 02/08/11 at 00:46:48

Thankfully, the pain was not as bad this time because I took more medication than usual... I just couldn't believe how much I needed! :o The upside is that now I know SOMETHING works. I didn't have to go to the ER :)

Heather

Title: Re: Agonizing cramps
Post by missybean on 02/08/11 at 03:45:59

I don't know if you have heard of the Mirena IUD but a lot of women like it. My mom was having really heavy bleeding a awful cramps, I was with her one time and she was in so much pain she was shaking. I felt so bad. She saw a few doctors and they said hysterectomy was the only option and the best one. About a week before the surgery she got another opinion and the doctor suggested the Mirena and she loves it! It stopped her bleeding and she rarely gets cramps.
Now I got the Mirena and I am one of the few who didn't care for it. I didn't have a period on it for like a year which was nice, but they say it's non systemic (the hormones) but I beg to differ. I had it pulled after 18 months. But everyone else I met loves it. If you don't want one with hormones they have a copper one (IUD).
I wish you could take motrin. :( It's the only think that helps me. Oh I also use a heat pac that wraps around my lower waist, that helps major too.
Melissa

Title: Re: Agonizing cramps
Post by Starflower on 02/08/11 at 06:27:23

I already have a Mirena IUD ::) Imagine how bad the bleeding and cramps would be otherwise! My mom also had a hysterectomy (around age 40) due to heavy bleeding and severe cramps. This is what I am really, REALLY trying to avoid. I think I'm done having kids anyway... I just don't want to have major surgery (especially one that affects your hormone levels so dramatically) unless I have absolutely no alternative.

Heather

Title: Re: Agonizing cramps
Post by missybean on 02/08/11 at 06:42:27

Well this isn't a pleasant situation. I heard of endometrial ablation but that sounds worse than surgery. What do the docs say about your hormone levels. Are you estrogen dominant? I am sooooo sorry you have to deal with all this. Isn't being a woman wonderful!
Melissa

Title: Re: Agonizing cramps
Post by Starflower on 02/08/11 at 07:31:44

I had an ultrasound a few months ago... no fibroids, no endometriosis... IUD in the right place. My gynecologist said that my lining is a bit thick for someone with a Mirena, but still within normal limits. The bleeding is not too heavy, but these cramps really SUCK. It seriously feels like being in labor. I'm not sure an ablation would do anything to help. In fact, with the mast cell disorder it might make things worse (even in normal people, mast cells migrate to sites of injury).

Nobody has been interested in testing my hormone levels... GP, GYN, endocrinologist... nobody. Between attacks I'm pretty much in denial about this problem :) But when I'm really suffering... UGH.

Heather

Title: Re: Agonizing cramps
Post by Lisa on 02/08/11 at 08:39:16

I can't tell you when or who said this for I can't remember, but I do remember another patient saying that her doctors suggested ablation and that she spoke with Dr. Castells about this.

What the out come was I also don't remember! However, Heather, this is one for an authority for although you are right, that the mast cells gather to the site of an incision, things do indeed settle back down again. They are only worked up for a while, it doesn't necessarily mean that they are constantly kept in aggitation. They will settle.

Heather, like it or not there are need for surgeries and surgical procedures with us. I seem to be the queen of some of these and yet I can assure you that although the mast cells are called into action, this doesn't mean that they will permenantly be kept in action. Once the healing process is over, the site settles down again. The body seeks equilibrium even with a mast cell disorder on hand. So I don't think that this is a major reason for not doing either the ablation or the hysterectomy if it came to that. And, there are those cases where the hysterectomy has actually brought and improvement to the patients due to the removal of the hormone going up and down. The uterus releases hormones as well as the ovaries and this could very well give you improvement.

However this is not the major concern here, Heather. It's the pain and the risk of hemorrhage which are the issues. If you are finished with children, then the need for your uterine function is over. If your uterus poses a threat to your health and life, then you must consider what to do about this. I had fibroids and they were growing way, way too quickly and they were presenting a threat of hemorrhage and I had no other options for I have breast cancer in the family. I had to remove my uterus, period! I would not have any more difficulty in making that decision today than I did with my open heart surgery last June! My kids are still too young and NEED ME HEALTHY AND PRESENT and they are my priority over any physical part on my body! I don't care what surgery in the future I may have to face, my children's needs come first!

So, I think that if your doctors are not hearing you that it's time to go back to the doctor hunt and begin researching your options and take some positive steps to resolving this situation. Your having to take such strong meds isn't good for you nor for them and this too is dangerous. Your children, especially are little and they don't need a doped up Mommy around the house when she's got to be supervising them. Something serious could happen while you're in that state and then what happens! kids get into mischief, especially boys, and they need an active and healthy mother to keep them in line! I've got 2 very well behaved boys, but boys are dangerous people since they don't seem to have the same fear of harm that girls do and so you can't trust them when you're laid out on the couch and loopy! They figure that out quickly enough and that's when trouble hits. So, Heather, back to the streets, finding more doctors and with them some answers!!

Hugs!

Lisa

Title: Re: Agonizing cramps
Post by Starflower on 02/08/11 at 12:53:22

I actually did contact Dr. Castells about the abnormal bleeding, but I never heard back from her. Oh well.

Nobody is talking "hysterectomy" yet. I really like my gynecologist, partly because she's not a "Let's do surgery!" kind of person... although one of my best friends had her as a surgeon and she did a great job.

I've been through an extensive work-up to figure out why I bleed so easily and nothing significant has turned up. So... I don't think I'm in serious danger of hemorrhaging. I just sent my hematologist an e-mail though... let's see what he has to say. Maybe he can pull another rabbit out of his magic hat [smiley=thumbsup.gif]

Title: Re: Agonizing cramps
Post by missybean on 02/08/11 at 16:04:37

Did you have heavy bleeding like this before you had your Mirena? I only ask because when I got mine I had 2 periods then after that none for a year and then periods came back and they were so painful, more painful than before I had the IUD. This was right around the time my joint pain and hives were bad, and I thought maybe my body hates this foreign object in my body and is trying to reject it. I also thought maybe because I have some autoimmune issues my body is rejecting it. I had it pulled......I still have those symptoms but I was just curious if the heavy bleeding started after the Mirena. Sounds like it's hereditary in your case though. I wish you could take ibuprofen, it really helps my cramps. Hang in there! Thoughts and prayers that you can get this under control so you don't have to be in pain anymore. Hugs!
Melissa

Title: Re: Agonizing cramps
Post by missybean on 02/08/11 at 16:36:32

When you get them to do a hormone panel, ask them to check your vitamin K levels. Maybe your Vitamin K levels are low. I know you mentioned gluten being and issue for you. Don't know if you have celiac or not but when I discovered my problem with gluten, one of my symptoms was steatorrhea which the doctor told me is a sign I'm not absorbing all my nutrients. So if you had previous issues with gluten and were having digestive issues you could very well have something as simple as vitamin K, and it takes sometimes up to a year for your small intestine to heal.
Melissa

Title: Re: Agonizing cramps
Post by Starflower on 02/09/11 at 00:37:50

Hi Melissa,

I actually don't have heavy bleeding right now (although I did in my 20s)... it's just abnormal bleeding. I had the Mirena put in when my son was six weeks old. That was in April 2008. After four MONTHS of nearly continuous bleeding and abdominal pain I put myself on the gluten-free diet (I also went back to the OB/GYN practice where I had the Mirena put in, but that's another story). Within 48 hours I knew the gluten-free diet was just what I needed. The bleeding started decreasing and by 2009 the Mirena was working pretty well. Now when I bleed it's just spotting for two or three days. Unfortunately, I still bleed very, very easily. Do you know anyone else who gets a period from traveling on an airplane? ;) It doesn't matter if I just bled a week ago... I'll bleed again.

I'm not sure if my problem with gluten is truly celiac disease (long story). I've been on the gluten-free diet faithfully since August 2008. For the first time in YEARS I no longer have steatorrhea! It's one of those symptoms that I thought was just "normal for me" until it went away. So... I suspect that my vitamin K is fine by now. I eat leafy green vegetables on a regular basis.

Like you, I've also thought that maybe my body was rejecting the IUD. But... most of my autoimmune symptoms have decreased significantly. Why would my joint pain and fatigue go away (!!!), and yet I still have these problems with cramps and abnormal bleeding? This is the mystery I'm trying to solve. Good thoughts though :) It could very well turn out to be another autoimmune problem.

Heather

Title: Re: Agonizing cramps
Post by chaco on 02/09/11 at 03:44:56

Hi Heather,

You don't have to have Celiac Disease to be gluten-intolerant. Case in point: My younger son tested positive for the genetic marker for CD when being screened for MS. My older son still had high Anti-gliadin SigA (over double the high end of normal) 7 years post GF. He and I both showed marked improvement after going on a gluten-free diet, which my GI doc said is the ultimate test. Funny thing, all 3 of us tested negative for CD per routine CD blood testing. :)

Bleeding tendencies seem to be inherent to connective tissue disease. Not surprising when you think about it as veins and arteries and the whole vascular system is connective tissue. Likewise, mast cells are part of connective tissue. So I could see how mast cell disease could affect coagulation and/or cause excessive bleeding.

My pre-surgery bloodwork always comes out fine, aside from chronic low wbc and leukopenia. Yet I bleed like a sieve, always have. When having my first bone marrow done last month, blood shot up from the puncture site like water from the blow hole of a whale. I think it freaked everyone out. <lol> It took a while for them to stop the bleeding, and they had to revisit the issue again in recovery - no surprise to me. Bleeding tendencies are a feature of Ehlers-Danlos Syndrome, and I have that connective tissue disease as well as some sort of masto it seems.

What type of mast cell disease do you have?

Deb Mc

Title: Re: Agonizing cramps
Post by missybean on 02/09/11 at 04:34:37

Heather-OMG! That is so freaky you bleed from going on an airplane.
Finally someone else who had steatorrhea. I still have it several times a week. Not really sure whats going on there. I heard masto people have it. It totally bet you have celiac. You know the PA I used to see, she retired last year( I cried )thats another story, her husband was a gastroenterologist and she told me the endoscopy is looked at as the gold standard but really she said it's not perfect and she said you don't know how many people I see who have all the symptoms but the test is negative, but they thrive on a g-free diet. You know this, probably just as frustrating to you as it is to me and many others.
When did you get diagnosed with Autoimmune masto? Did a lot of your symptoms come on after a pregnancy? That's what happened to me, 2007 my first daughter was born and months after that my body went haywire. I have noticed quite a few people with autoimmune diseases say pregnancy triggered it. Just wondering if that was your case as well.
Melissa

Title: Re: Agonizing cramps
Post by Josie on 02/09/11 at 06:40:05

Hi heather ,

I am so sorry about how poorly you are xxxxxxxxxxxxxx I was reading and you said that endometriosis was excluded with an uss . It also elusdes CT scans . Endometeriosis can only be diagnosed by a diagnostic laparoscopy . This was suspected in me , as my reason for Abdo pain , double periods , pain in my liver area and back pain . It was negative .

The mariena coil is a useful tool . there are also other treatments avilable . Some gyne promote using these to asses effect before surgery others just want to look and know for themselves . less invasive is a hysteroscopy , camera into the womb for direct assesment of the womb lining xxxxxxxxxxxxx This doesn't diagnose endometriosis in the pelvic cavity , only inside the womb xxxxxxxx

My surgery was done in a hospital not believing my mast cell status .
I per medicated myself with steriods and pririton (H1) and they agve me IV ranitidine on induction .

I came through as planned . i felt like I had misbehaved in theatre , tight chest , itchy later that day as i am after a biggie ( epi pen level ) . The anethatist didn't look me in the eye when I asked if I had behaved . So I do't know if I did degraualte .

BUT , This was in a hospital poorly prepared . Any planned surgery for you would be well planned and you suitably medicated under dr cassels guidance .

I also ahd emergency surgery on an abcess , on good friday without my main notes . I premedicated myself again . I did fine xxxxxxxxx

Below the waist procedures can be done with spinal analgesia or an epidural using the local anesthetics that are safe for us . NO nasties . This will remove the risks of general anagesia and you can be observed fully for all / any signs of problems xxxxxxxxxxxxxxxxx

I know they don't want test your hormones . BUT in not doing so they are not in possestion of important info that is easy to gain . In not doing so they may be compromising your care xxxx Its hard being strong in the face of all our doctors . But in this situation I think pushing for this is vitally important .

I am assuming you have had a smear - PAP smear . Just to be safe :-).

I am seeing a heamotologist / immunologist ( Pal of Dr Grattan here ) on the first of march . Ill let you know my outcome in the persuit of an answer to my bleeding , Both extra vaginal bleeds between periods and rectal bleeding in realtion to my reactions . One happening in A&E after a 2 epi pen and multiple other treatments inc IV magnesium for continuing wheezyness . I had a chest infection as my trigger . I have associated the bleeding with corn and gelatine in my meds . They are now clean and I am having less . They come in a week of a biggie either before or after xxxxxxxxxxxxxxxxxx

I manged to hold off my period related biggie last night xx I have found ranitidine a god send in histamine mopping up terms . I lost my nights sleep in self preservation mode . I have an awake period after any significant reaction , today I came on .

I have musule shakes / spasms in all muscule groups at various times . As Lisa said smooth musule cramps are a histamine effect and compliment chemical 3a 4a and 5a ( anaphlatoxins ) Continual low level oxygen stops them , whist I have it :-) . My legs shake eevy night when i settle . My thoughts are - after scans of the area , that it is enlarged lymph nodes , in my pelvis , mopping up my leg angiodeama each night .

Hugs and many thoughts xxxxxxxxxxxx

Josie

Title: Re: Agonizing cramps
Post by Lisa on 02/09/11 at 06:57:45

You can have steatorrhea without having Celiacs! I get this often enough and I've been tested for Celiacs and everything tests totally normal! I don't have a problem with gluten but carbohydrates leave me bloated and with gas.

This is masto! This is part of what this disease causes within us and this is why we need Ranitidine and Cromulyn and such meds because even though our intestines may not have increased mast cells or out and out mastocytosis it doesn't mean that they mast cells are not triggered by just the activity of passing the food along and digesting it!

Doctors must take extreme care in the physical manipulation of the intestines when they do any kind of invasive medical procedures for the intestines are full of mast cells normally. So, just like those patients who have the skin lesions must take care in rubbing of their skin and the such and even those who don't have the lessions will have dermatographism, this is also the same for the intestinal tract due to the larger quantity of mast cells there. This is why we have so many gastro-intestinal issues, because depending upon the types of foods we eat, these foods are going to create issues, not always because the foods are high in histamines but it may also be the fiber quantities or perhaps the chemical breakdown processes, etc. Some foods create more gas naturally speaking. Well, I don't know about you all, but this will get me going - it physically creates issues with all of the rumbling e gurgling, etc. I don't mean to get gross, but you've got to consider just the plain physical aspects of what happens within the intestines. This is why when we do colonoscopes or some kind of abdominal surgery or exam, there is a need for the doctors to be fully prepared for problems because the physical manipulation of the intestines causes degranulation, and depending upon the patient, it can be a lot!

Lisa

Title: Re: Agonizing cramps
Post by Starflower on 02/09/11 at 07:11:43

I was diagnosed with an autoimmune mast cell disorder in January 2010. It doesn't really matter what name you give it... MCAD, "autoimmune mastocytosis" (which I kind of like, but who am I?). The fact is that the reason my mast cells are so trigger-happy is because they're constantly being stimulated by my own immune system. The antibodies don't destroy the mast cells, they just set them off. It's like I have a peanut allergy, but I'm allergic to myself.

Since you asked for the low down on gluten, I'll give you the fifteen-minute version (then I need to go teach my next class)...

In April 2008 I figured out that my son was severely intolerant to casein, the protein in cow's milk. I took that out of my diet and he returned to normal within a couple of weeks (yeah!). I thought the dairy-free diet might help get rid of my abdominal pain and bloating, but no such luck. In August 2008 I was diagnosed with Hashimoto's disease, which was actually kind of exciting because it gave me answers to a lot of questions. I started reading about that and noticed that "gluten" kept coming up. I went to a local allergist and... without doing any testing... she said, "Oh sure, give that a try!" I don't think she understood how serious I was. About two months after I stopped eating gluten I realized that I needed a celiac panel ASAP. That was negative... it only included the most sensitive tests (EMA and tTG), which are often negative after just one or two weeks.

Six months later I finally got the allergist to give me a celiac panel, but by then it was too late. Three months after that I had an endoscopy... of course that was fine too. On my own I had my genes tested and I do have the DQ8 gene, which is one of the markers for celiac disease. It doesn't mean everyone with DQ8 has it... just that the risk is there. At this point, I don't really care what my exact problem with gluten is. I can't eat gluten without bleeding and severe cramps. Would you eat something that made you so sick? NO WAY am I going back on gluten just to have someone (maybe) tell me, "You need to be on the gluten-free diet." STUPID.

Looking back, I've had symptoms of a mast cell disorder for a long time... since I was a teenager. BUT... it wasn't until after my son was born (my second living child) that my body went totally haywire. The labor itself was fine. Right after the birth I started shaking, I felt really COLD, and I almost threw up when I tried to breastfeed. The cramps and nausea were unbelievable... it's a miracle that I was able to keep breastfeeding (I was very determined). Pregnancy was definitely a major trigger for me. My second one ended in a loss at 17 weeks (cause undetermined... probably autoimmune), so I was very, VERY stressed for that whole third pregnancy. I went for an ultrasound every 2-4 weeks and had weekly counseling sessions. It was horrible. Imagine what THAT did to my mast cells :'(

I did have a pap smear in October. This pain/bleeding is seriously the last mystery symptom I have :) Everything else I know how to take care of! Isn't that awesome? I don't want anyone to think that I'm really suffering all the time... I'm not. Just during these attacks.

Heather

Title: Re: Agonizing cramps
Post by Riverwn on 02/13/11 at 05:36:44

I read in a few different articles on the NIH site that the thickening of an organ lining is due to mast cell activity, figures eh???

I dont think theyy will prescibe the buscapone--because here it is known as scopalamine and used in surgery for procedures that are very painful--it affects pain but more than that, it makes you forget whatever happened.

I totally agree that a muscle relaxer should do the trick though. I would ask for Flexeril and see if that works..

I would also suggest an old time remedy that I used often... put castor oil externally on your abdoman, cover with a piece of flannel and place a hot pad on that for 1 hour.. Try it, it used to work wonders for me and its cheap!!

Hope you feel better,
Love you Hon,
Ramona

Title: Re: Agonizing cramps
Post by Lisa on 02/13/11 at 16:17:05

No, no, Ramona, they are two different meds!! Close in name, but different in the way they work.

Buscopan is Butylscopolamine and the other is plain scopolamine. Take a look a them both. You'll see what I'm saying.

http://en.wikipedia.org/wiki/Scopolamine

The doctors here in Brazil HIGHLY recommend Buscopan for pelvic cramping of many issues and it truly is a very effective and good medication. They use it for passing kidney stones and gallbladder stones, uterine cramping and i see now that also for bladder spasms. It's very effective medication but why it's not okay'd in the US I don't know. But then, do we really need to go into that subject?!

http://en.wikipedia.org/wiki/Butylscopolamine

Butylscopolamine is used to treat pain and discomfort caused by abdominal cramps, menstrual cramps, or other spasmodic activity in the digestive system. It is also effective at preventing bladder spasms. It is not an analgesic in the normal sense, since it doesn't 'mask' or 'cover over' the pain, but rather works to prevent painful cramps and spasms from occurring in the first place. The attachment of the butyl-bromide moiety effectively prevents the movement of this drug across the blood-brain barrier, effectively minimising undesirable CNS side-effects associated with scopolamine/hyoscine.

Title: Re: Agonizing cramps
Post by Starflower on 02/15/11 at 12:24:08

Another little update...

I finally heard back from the Hereditary Angioedema Association! Who knows if this is the cause of my recurrent abdominal pain and bloating... but it seems like an idea worth checking out. I've ruled out sooooo many other things. It's also a problem my mom experienced around the same age (genetic link?) and it doesn't go away with the normal mast cell medications... even Tylenol is not enough. A double dose of Lortab got rid of the pain last time. Unfortunately, it also gave me loopiness :D and a bit of nausea (which did go away with Benadryl). I also had a rash following the last episode... I don't think that was a coincidence. I know hydrocodone is a degranulator, but I am DESPERATE during these attacks.

Anyway... the HAEA is going to help me find a specialist :) We'll see if anything turns up. I'm certainly not going to diagnose myself, but it is interesting reading about the "abdominal angioedema" that occurs with HAE... often in the absence of hives or angioedema in other parts of the body. Hmmm... Also, people with HAE "have a propensity to develop autoimmune disease." Sound like anyone you know? ;)

http://emedicine.medscape.com/article/135604-overview

Heather