Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> In need of encouragement RIGHT NOW! >> sick of this! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1311520435 Message started by missybean on 07/24/11 at 04:13:55

Title: sick of this!
Post by missybean on 07/24/11 at 04:13:55

I don't know what is going on but lately I just can't seem to get good symptom control. Battling the hives and itching....better after a dose of prednisone. But now....the pain. Uhhhh, my pointer finger hurts so bad I can barely bend it, same with my wrist on the opposite hand and now my keeleys tendon hurts and is so tender to touch let alone walk on. Seems like whenever everything flares like this I seem to always have a problem with my knees buckling and feeling like they are on the verge of snapping out of alingment. But there is no visible swelling. I'm afriad to take IBU's because of all my stomach issues. I tried to wean myself off of the prilosec, HA......not going to work. Doctor said I could go down to one a day but I tried it and then the chest pain and reflux started up. Does anyone else think it is just ridiculous that even taking 300mg of zantac twice daily isn't enough to calm a stomach down. I have an appointment with my new allergist this coming friday, I'm wondering if I should see the rheumatoligist too, I don't know if this is a fibro thing, a masto thing or some kind of autoimmune thing. I'm feeling down in the dumps right now, trying to keep up with my little ones and thinking I'm to dang young for this! I hear everyone talking about allegra, maybe I should try that? Now, my husband informs me that his work is slowing down and there is a good chance I will need to get a job temporarily. I keep thinking to myself how am I going to do this? I'm stressed, trying not to be. Thanks for listening, don't mean to complain.
Melissa

Title: Re: sick of this!
Post by DeborahW, Founder on 07/24/11 at 06:06:14

Have you examined what is causing these triggers? You need to write down everything that you eat and drink and how you feel afterwards. Do this for at least a week so that you can find patterns. This is really important because if you are having all these GI issues, then we just need to figure out what is safe for you. It could be that you are super disciplined in what you eat, but I find that most people truly aren't. If you can find one food that is safe, stick with that and then add some new foods slowly and see what happens. I am highly food sensitive. I try to eat all natural unprocessed foods with no spices or herbs. I also know what foods I just cannot eat no matter how natural they are. I am very stable now, but I wasn't originally!! This technique really helped me.

Now the weather is probably adding to your triggers. Remember what Ramoma always says about each trigger filling up your bucket until it overflows (the point when you get sick). Most of the US is experiencing upper 90s and 100s temperaturewise. Just going outdoors at all can trigger you even if just going to the grocery. Also, I am finding that by getting a ton of sleep (9 hours), I am feeling as well as if I just started a new med! So examine how much sleep you are getting.

Need to go, but let me know if I can further help!

Title: Re: sick of this!
Post by Riverwn on 07/24/11 at 06:16:28

Im so sorry Hon..

I agree with Debbie 100%, Youre in a cycle of reacting.. take a step back and describe whats going on to us..You need much more sleep and to stay out of this heat even if its for a moment.. you cant tolerate it right now..youve told us that youre taking 300 mg of Zantac twice a day but what else?? Give us some info to start at...

love you bunches
Ramona

Title: Re: sick of this!
Post by Lisa on 07/24/11 at 09:55:05

I'm sorry Melissa that you are going through so much!! Yes, it is AWFUL!! and we know how awful it is!!!

Melissa, if you are only taking Ranitidine 300mg and Polisec, you are clearly undermedicated and this is why you are going through such grief. Ranitidine and Prolisec can't handle it all. Granted, Ranitidine is an H2 blocker, but not one of us can make it purely on an H2 blocker on it's own. This is something that most doctors are not understanding. They know that within the stomach and intestines the h2 histamines are the most active histamines present, but for some reason, taking only ranitidine and prolisec won't do it for us. We have H1 histamines also influencing our acid production from other areas of our bodies which is why we are put on both H1 and H2 blockers.

I had to do an experiment with my meds a while back and my doctor had me go off of just my H1 blocker for a week and then switch and go off of my h2 blocker. It was impressive to see the areas which are affected by each type of histamine!! When I was off of my H1 blocker - allegra, I was truly miserable!! My skin, nose, eyes, pressure and breathing were all affected and my stomach issues increased too!!! I had more reflux and diarrhea!! You would think I wouldn't seeing that there are more H2 histamines that influence the gastrointestinal area, but I did. The reason why, I believe, is because of the increase is overall activity, this reflected into the gastro/intestinal area and overflowed that bucket allowing for more activity there in turn.

Yet, when I switched the meds, everything calmed back down again and i didn't notice such a great lack for the ranitidine!! I did have to take more prilosec (omeprazole), but the diarrhea remained the same.

This taught me how much more important our H1 blockers are for us, and a good lesson it was. This is why I think you're in trouble, Melissa. Your H1 blockers are not high enough and with this heat triggering you as much as it is, this is only making it worse. And now with your husband dropping that bomb, he's added an emotional stress that you didn't need right now. If anyone needs to consider working more, it should be him, getting an extra part-time job for taking care of 2 small kids and being sick at the same time is something that he wouldn't care to do if it were him. Too often our men will lean upon us, knowing we'll give up everything to help them, when in reality they should be the ones bearing this burden. It's all to easy with out generation for the men to say, Wife, you need to help! My father would have died before asking my mother to take a job to help out, and my husband is much the same. He's not adverse towards my working, but he's the major bread winner here and he has no problem with that burden. If he were to become unable, then that would be a different matter. Yet, with the way things are for you right now, Melissa, you're not in any shape to take on a part-time job, no matter how tight things get! It will put you in the hospital!!!

If you husband needs your help and you want to, then you've got to get some MAJOR improvement!!!

If you could tell us what meds you are taking, perhaps we can make some suggestions which will help you until you can get to a doctor who knows what he's doing and can adjust those meds properly for you.

I hope this helps!

Lisa

Title: Re: sick of this!
Post by missybean on 07/24/11 at 14:53:36

Well girls, the sleep thing is an issue. My 2 daughters 4 and 1 share a room and 2 months ago we took the 4 year old out to see if it would help the 1 year sleep better and it does. Weird? Light sleeper I guess. So about a week ago we decided to put the 4 year back in the room and my baby started waking up again ...up to 5 times a night. So I know that isn't good but my flare started when I WAS getting enough sleep. So I don't know.?????? I also flared last month around the time of my period, did 3 weeks of prednisone to get out of that and then not even 2 weeks later, hives started again and this time the joint pain is here. I'm done with the course of prednisone and the hives are much better, just a few left but the pain in my hands and wrists......well it sucks. I have majorlly cleaned up the diet, veggies and meats and now cutting fruit even. Thats why I was so surprised when I tried to whean off prilosec I was so surprised I was still having reflux. My diet is so good lately.????? The flushing has started again and it is always around the same dang time. Between 3 to 7pm, what I noticed happening is it is like internal thermoter just goes crazy and I get so hot and then the flushing starts, after that the itching. I feel like there is some kind of hormonal component to this.???? I mentioned this to a few doctors and they told me it could be my cortisol levels. Because around that time is when the levels are starting to drop in the lower range. They told me to see an endro doc, but really I will have to find a new one because he keeps telling me nothing is wrong, I think I irritate him. Dr. Theo told me to have an ACTH challege test. I feel like if I could stop my body from getting so dang hot for NO reason then it would help tremendsly. SO basically with this flare I have had hives, more flushing, and joint pain as where last month it was mostly hives. Here is a list of my meds
Zrytec 10mg, up to 30mg if needed
Zantac 300mg twice daily
Prilosec 20mg twice daily
thyroid meds
fibro meds
cromoyln soduim 200mg 4 times daily
Hydroxyzine 50mg at bedtime, lately 75mg
Benadryl as needed

I don't feel like the cromolyn does anything for me. I also have Pancreaze in my cupboard as well as singular, both which I'm a little hesitant to try and it what order. The singular .....I think I will try it this week. My appointment with the allergist is this week.

I don't really mind working, I actually enjoy getting out of the house. It's the stress of starting a new job and performing and once thats past I'm fine. But the thought of having to be in conditions like heat/cold, chemicals, perfumes and not having control over it, that scares me. The joint pain scares me a bit too, it's hard to lift things when your hand hurts.
I guess I will have to keep a diary and talk about everything from how much I slept to what I ate and how my stress and emotions where that day. Wondering if my triggers are changing.
Thank you so much for your guys help. I so appreciate it!
Melissa

Title: Re: sick of this!
Post by Joan on 07/24/11 at 17:45:08

Hi Melissa,

The job thing could be making your symptoms worse, or it could be because it's hot outside, or something else. Some people do have cyclical problems that seem to be hormonal. Definitely check your diet. There may be something that triggers your symptoms.

Most people take H1 and H2 histamine blockers in the morning and evening. If you're already doing this, you can add another antihistamine in the afternoon, an hour before you've been starting to get symptoms. I find Allegra to be a better antihistamine for daytime than Zyrtec, which I take at night. Less drowsiness. If you can take Allegra, you could try switching to it in the a.m. Do run this by your doctor, though, before making a change. You could also try alternating Zantac and Pepcid (20-40 mg.), a.m. and p.m.

Title: Re: sick of this!
Post by Lisa on 07/25/11 at 01:23:19

Hi Melissa,

Don't worry sweety, we'll help you get through this!! I very honestly think you've put your fingers on your major triggers here and so knowing these things will help you figure out what you need to so about it.

Since our bodies aren't time clocks, they fluctuate as to how they trigger - some days more triggering others less. So, you need to be as flexible with your meds as your body is responding and take your clues from it.

This is something that took me a while to learn, but once I figured it out, I was not so hesitant to step in with my meds. One of my doctors, who isn't a masto doctor, also said, Lisa, when you're needing it, hit in with those extra meds! It made me see that for even our doctors, meds are not a strict science either. So we need to listen to our bodies and learn to "go with the flow".

Since your doctor has given you up to 30mg of Zyrtec a day, GO WITH IT! I agree with Joan, I think allegra very effective and no matter how much I've had to take, it's never left me dopey. I've had to take as many as 5 in a day, but I'm down to only 2 as a rule and then add a 3rd when I'm acting up. So, if you could switch to Allegra, I'd take 180mg in the AM and then the Zyrtec at night. However, since you are in a flare situation, you must increase your antihistamines to bring back some stability. So, I'd take another dose of allegra at 1pm - it will help loads.

Yet, if you choose to stay with zyrtec, take the 10 in the morning, another 10 at 1PM and then the 3rd 10 at 6pm with your zantac. Try this for a few days and see how you're doing.

I would also add the singulair. I have been absolutely AMAZED at the difference I feel when I don't have any singulair in my system!! I ran out this past week and had to wait a bit to buy more. WHAT TORTURE!! On Thursday I went out with my husband for a drive. While in a small town I was struck with explosive diarrhea due to the stress of the drive itself - not a big deal to stress me, but that was the trigger, but I was not feeling well due to the lack of singulair anyway and just adding that extra physical stress was enough to put me into a bad way!! After I found a bathroom I took an extra allegra to help deal with the reacting and it all improved, but then on the way home I fainted. Then when we got me home I had to rest on the couch and I fainted out again!! Then after laying there for a while my husband ( who thought I was resting) woke me and gave me more allegra and then ranitidine and yet 15 minutes later I was back to the bathroom!! And later on that night I fainted for a 3rd time!! The following day was more of the same, but since my husband bought the singulair for me I took it that evening and things began to improve again! I stayed home on Saturday and Sunday and each day was better until now I'm back to my normal again and at work. Singulair brings me stability, Melissa, and I know it does the same for Heather. Not all of us can handle it, and why is the curious question, but for those of us who can, it's miraculous medicine. It clearly works for me as well as antihistamines do and without the two as a combined treatment, I'm very unstable which this episode I had clearly shows!!

Now, as to that monthly problem I recommend that you and Heather have a good talk over this for you may have some issues with progesterone, something Dr. Castells is trying to figure out with her. Heather can pass to you some of what Dr. Castells has asked her to do in order to determine if this is one of your issues. However, dealing with it is something we can help you with.

When you get into that time of the month and you know you are reacting more, then since the tides are rising, you must rise with them. You need to increase your medications along with the reacting that your periods bring to you. This means possibly doubling up your doses or putting them to be in shorter terms so that you don't go more than 6 hours without a booster pill.

For example: you are in this situation of the intense heat so with this, your reacting increases so in order to deal with the increased reacting you must increase either your doses or add one to make sure you don't go 6 hours without, which is what I've suggested you do. I think adding one extra dose at 1pm ideal which is what my doctor did with me. Then when the temporary situation improves, you merely remove that extra dose, it's that simple. Yet when you're working with the heat and your period both together, this is when you are working with doubling your normal dose AND adding in an extra. Do you see how it works?

Melissa, speak with Dr. Theo about this. Tell him what you are going through and how your allergist is scared to do anything with your meds and ask him how you can improve this situation you are going through. See if he can adjust these meds for you. Sometimes they will do this.

As to working, I understand about work being a way of relieving the stress of home life. I too work now, but I can't imagine what it would have been like when my kids were little for although living 24/7 with little kids can be incredibly stressfull, you still are able to be at home and if you run into any bad reacting, the bathroom is right there as well as your couch and a means of trying to keep a low profile when the days are not good. If you're at work and you begin reacting, you're stuck with no means to work around it. This is why you need to not worry about working yet. Until you can regain some kind of stability, you're husband must bear the responsibility, which I know is hard for him, but this is how it is. Taking care of a family requires both partners and it's no easier to care for children and a home than it is to work out there. I'm 50 years old Melissa and I've got 3 children, 22, 20 and 13. I've been living with masto since my 13 year old was 8 and I know how hard it is to try to keep up with just an 8 year old when you are totally trashed!! I can't imagine how hard it must be with a 4 year old and an infant!! But to add a job on top of this, it's an incredible amount of physical stress and this is a major trigger for us. The lack of sleep, you already know about, but what many of our family doesn't understand is that mast cells are not only triggered by emotional stress but also by physical stresses and some of us are more sensitive than others. If I began to break a sweat, I begin shaking and trembling and my stomach begins to ache something awful and the next thing I know I'm racing to the bathroom and needing a fan and about to go into anaphylaxis!! My doctors shake in their boots to touch my abdomen for just putting pressure in the right spot on my intestines will put me into a show for them! a I'm so physically sensitive that even doing a bit of wrestling with my 20 year old son will put me over the edge!! I just can't do it!!!

So, until you can get your triggering under control and have more energy and stability, you've got to stay at home and be with your family. Once you can get this under control, then a job is a good idea for breaking up the stress of taking constant care of your kids is good for you, it relieves the emotional stress and gets you interacting with adults and this is indeed good for you. But just wait a bit, this process of regaining stability doesn't have to take long, but it does take the right meds and doses and also understanding of your triggers to manage it.

I hope this makes sense.

Lisa

Title: Re: sick of this!
Post by caormiston on 07/26/11 at 12:15:07

Melissa,
I'm so sorry you are having such a difficult time. Since I live in the same area as you, I wonder if all the COLD and RAIN we've been having might be part of the problem. I keep thinking I smell mold in my house since we've had such a horribly wet, cold spring and summer. The rugs I have at the entrance doors have not had a chance to dry out, the garage smells moldy, and the pump we have under the basement of the house is still pumping away, trying to get all the water out! I realize everyone else is suffering from the heat, but I think we might be suffering from the damp and cold and staying cooped up in the house -although this last weekend was finally perfect weather.

Work - Maybe let things settle down and get your health stabilized before considering that. You have more than enough to do right now just taking care of your family! Hey, I remember those days!! Three kids in 3 years - 3 seperate diaper pails (cloth diapers back then), falling into bed exhausted at the end of the day, only to wake up a short time later to attend to somebody!! It is tough being a Mommy (a blessing, but still hard sometimes).

You know more than I about medicine - but I would go back to that cute Dr. Naimi (?) for advise - he sounded like he was helpful.

I'm wishing you well -

Candace

Title: Re: sick of this!
Post by kristi on 07/26/11 at 18:04:11

Melissa,

Two things...I found this product called frogg toggs which is a cooling pad that you keep damp and the evaporation keeps it very cool. I lay it over my face and neck when I start to flush and react. It really seems to help dissipate the heat in my skin and works quickly. I think it helps keep the severity of my flushing lower and sometimes stops it in its tracks.

The other thing...Do either or your parents or any relatives have psoriatic arthritis? It tends to run in families. It's autoimmune, I believe and a rheumatolgist can diagnose it with blood tests. My MIL had strange hives and skin reactions along with terrible joint pain, particularly in her hands and wrists. Turns out this is what she has and now my husband is having the same joint pain and we're worried he's headed down the same path. Just something else to check into.

I'm sorry you are feeling so yucky right now. I hope things start looking up really soon!

Kristi

Title: Re: sick of this!
Post by mikev on 07/27/11 at 09:38:40

kristi:
A quick question for you on the frogg toggs. My feet always flush, but when I try cold water on them they turn almost purple so flush more. Does your face & neck do that when you use cold water on them. I'm trying to figure out if these would help me.
Thanks
Mike V

Title: Re: sick of this!
Post by missybean on 07/28/11 at 04:19:28

Kristi, thanks for the mention of that product, I often use ice packs on my hives or cold washcloths when I'm flushing and it helps. I will check out the frogg thingy. It's interesting you mentioned psoratic arthritis because my rheumatologist mentioned it a few times saying it could be that. But I ended up being diagnosed with fibro because the all the tests were negative except for antiphospolipid antibodies. No one in my family has it but my mom has psoriasis with I guess psoriatic arthritis can come along with it, but she doesn't have it. You have really thinking about this know because it was reading about online and it talked about how psoriatic arthris can affect you tendons too, especially keeleys tendon. Well, a week ago my keeleys tendon hurt so dang bad I could barely touch it and it was hard to walk. I thought, what the heck....I don't remember doing anything to cause this pain. Know today my other keeleys tendon is starting to hurt. My knees also hurt and they keep buckling. The pain seems to alternate from one hand to the other or one knee to the other. I believe there is some internal swelling but it really isn't visible on the outside.???? I have an appointment with the allergist tomorrow. Wondering if I need to call my rheumey.
Melissa
Melissa

Title: Re: sick of this!
Post by Riverwn on 07/30/11 at 19:02:35

Hi Missy
Im worried about you truly. Hives always mean anaphylaxis for me and I dont think your safe as long as you keep reacting like you are. Youve been given alot of good advice, I want to see you use it.

First there are 3 meds I couldnt exist without--Zantac 300 twice a day, Allegra 180 twice a day and Singulair 10 once a day. I could do without the rest if I had to but these three, NO! Your pain is masto related--inflammatory especially with the long bones of the leg ( your mast cells are produced in your bones) and the connective tissue of the body.

NO to work at least not for now.. add it up rationally... babysitter for 2 children a week, clothes, travel expenses, lunch--you would be paying THEM to work! Hubby has to bite the bullet here and get a second job,, he cant be blind to your health and if he isnt seeing it, you have to put your foot down. Your main responsibility is to those children and you cant fufill that if you dont get your health stable ok??

Im being Momma here but I want the best for you Hon.. Please take care of you for us all and know I WILL be watching you! lol
hugs and love
Ramona

Title: Re: sick of this!
Post by missybean on 07/31/11 at 04:29:35

Hi Ramona, I had my appointment with the allergist and we have a treament plan in place for when I'm flaring. He gave me samples of allegra and more of singular and told me I could take oral histamine up to 4 times a day if needed. Basically what you guys recommend me to do. I'm feeling better as far as the hives are concerned, joint pain is still kind of there in my hands and wrists. The doctor did till me that if the hives become an issue we can always try plaquenil or methotrexate but he prefers plaquenil. He did recommend I get in to see my rhuematologist though, just to make sure they are missing a diagnoses.

Thanks for all the advise everyone. I appreciate it and I have been listening and doing what you all say.

Title: Re: sick of this!
Post by Riverwn on 07/31/11 at 06:45:23

Missy, Im happy about that!! The histamine isnt gonna help if your true illness is a mast cell disorder.. It has to do with the drug hitting a different part of what (does not) cause our illness but affects true allergies (not triggers) Lisa can explain this much better than I can.

I would start on your Allegra twice a day and the Singulair once or twice a day. That advice of taking meds as often as 6 hours a day is great--its the newest way Dr Castells is advising her patients--that our bodies cannot cover 12 hours and we fall into reacting.

You might see if you can get a gentle pain med while you are at the DRs. I hate to think of you in pain and I KNOW exactly how that feels.. I used to wake myself up crying at night.. sucked LOL... just be careful with whatever they give you for it.

I think your DRs are trying to help you but please let me make one last request--I want to see all your care orchestrated under one doctor--hopefully a masto expert..

Im not trying to be pushy (I can hear my family say OH yes she is!!).. I just care deeply for you Hon and I refuse to let you fall through the cracks with your medical care..
Have a GREAT day , rest, and know we are thinking of you!!
much love
Ramona

Title: Re: sick of this!
Post by Joan on 07/31/11 at 09:47:32

Hi Melissa,

If a mast cell disorder is causing your hives and pain, then the problem is that you're not taking enough antihistamines. Glad to hear your doc is advising you to take more. You can take a lot of antihistamines without harmful effects.

I don't know of any mast cell specialists who prescribe plaquenil or methotrexate, unless the patient also has lupus. If inflammation is out of control, generally a doctor will prescribe a course of prednisolone to see if that helps. Have you tried that yet? Sometimes it's hard for antihistamines to control things when you're mast cells are so revved up, and the pred will calm things down enough that antihistamines usually can keep things stable.

When I have a big flare or suspect one's coming, I go back mentally through everything I'm doing--meds, foods, exposure to environmental or airborne triggers, heat, stress--and then try to correct anything that's wrong.

Hope the extra antihistamines take care of it for you. Let us know how you're doing?

Title: Re: sick of this!
Post by missybean on 08/01/11 at 05:13:56

Ramona, I would totally see a mast cell specialist but there are none here in washington state. There is a mast cell researcher at the university of washington but I don't think he takes patients. Right now it's just too much for me to travel to Boston.
My current allergist has a few masto patients so he at least has some understanding and I really like him and he believes me when I telling him things which is a breath of fresh air.

Joan- I have been on 3 courses of prednisone in the past 2 months and the first 2 times it seemed the hives just wouldn't go away. Maybe the dose was too low. 40mg a day and then weaned off. I don't wanna have to keep taking prednisone, while it definetly helps my joints. Diabetes runs in my family and I already have insulin resistance. I wanna avoid that as much as possible. I really thought I was taking so much medicine how can I possibly still be having hives and joint pain? But I now know that really I can safely take much more histamines even though I hate it. I'm sooooo dried out. I'm pretty irritable too.
As far as the plaquenil and methotrexate, many doctors will prescribe it for chronic hives or things like psoriasis. My mom was prescribed it for psoriasis and it worked really well for her. So for me, I was relieved to know that if the prednisone isn't helping that I have other options. But for now, I have incresed anithistamines and have been keeping a journal of what I eat. My diet is pretty clean thats why I was really frustrated. But things change and I could have a new trigger. Thanks for all the suggestions, I will keep you all updated. Tried of typing my fingers are pretty stiff and achy.
Melissa

Title: Re: sick of this!
Post by missybean on 08/12/11 at 04:58:17

Well I had my appointment with my rhuemotologist and she thinks it is a fibro flare, she just I was really tender. She told me to exercise and maybe see a counselor. Lol! She said she didn't know anything about mastocytosis but she said it sounds like a flare in one can cause the other ailment to flare up. She does think I have any arthritis which is good news. She ordered blood work like ESR, non-cardiac CRP, UA with mirco,culture and sensitivity, ANA, and lupus panel. I have to look some of those up....don't know what they are.
I still have hives and joint pain......not getting better even with adding allegra and singular. Wondering if there is something in my house making me sick because when I spend a good part of the day out and about I'm less reactive. Hummmmmm. Still keeping a journal and haven't figured it out yet.
Melissa

Title: Re: sick of this!
Post by Riverwn on 08/12/11 at 06:47:16

Im so sorry Hon, youre still suffering with this.. ok lets take it one thing at a time...

I know how you feel about taking Prednisone, Im right there with you.. but.. IF you do take it again I think youre absolutely right--that dose isnt enough for how strong youre reacting. Talk to your DR about 60 mg ok?? And please have an emergency stash on hand, just in case.

Do NOT exercise unless you are sure youre not one of the ones who has exercise induced reactions--I do and it would put me in the hospital. I DO think she is right however about you being in a flare and a cycle of reacting--that hasnt been broken yet.

He gave me samples of allegra and more of singular and told me I could take oral histamine up to 4 times a day if needed. How much of each are you taking?? mgs and how many times a day? You can go up to 30 mg a day on the Singulair and on the Allegra?? I take 180 mg twice a day and will take an extra in between if I react to something.. I just have a feeling you are on too low doses to help as much as you could be helped. Also remember that Dr Castells now advises to take antihistamines every 6 hours--so obviously there are alot of us who are running around unprotected for some time during the day.

Dont worry about what those tests are for--until you get the results then only look into the abnormal or positive levels--Tell us what they are and we can help with that. Remember that masto is a disease/diagnosis of exclusion--we have to test neg for other stuff just to knock it off the 'possible' list. PS YOU keep copies of ALL lab tests.

Look in the older parts of your house that might have hidden water damage and thus hidden mold and mildew.. that can set us off big time.. I just had some torn out of my kitchen and rebuilt the arear near the removed mold .

Just remember, many people are scared to take the level of meds we need to take, to feel better and stop the cycle of reacting.. but what is worse?? The constant reactions and feeling ill OR taking a chance and higher meds (under your DRs supervision) and feeling much better?? Many times people think they react to a new antihistamine when the truth is, they were reacting anyway see?

Im hoping you feel better soon!!
many hugs
Ramona

Title: Re: sick of this!
Post by Sandi on 08/13/11 at 19:45:11

Oh MissyB I haven't been on in forever. So sorry sweetie. I hope you've discovered something new. I wanted to back up Deborah's post. I have found a lot of people think they are restricted and truly are not in food. There really could be another something thats bothering you. Truly break foods down to the basics no, mixed ingredients packaged crap! I cannot tell you how my fibro pain lightened when off of offending foods and yes they take forever. And just so I don't sound so all in love with my predicament of not eating crap, I was just having a pity party disgust this weekend with my diet. I spend my life preparing foods! Uggh. Onto that subject is your job, possibly you could focus on meal preparation for you and the family serious sale shopping which could reduce the families monthly expenses so you wouldn't need a job. You are quite ill and daycare for a 1 and 4 year old isn't cheap and that needs to be figured into your temporary income if you had to go back. So possibly your way to make money and feel better is to concentrate on pure foods and food on sale, cooking and freezing ahead of time. Everyone on here is so spot on always with undermedication. I was struggling, the only brand allegra I tolerated was from Teva Labs, well with the OTC change the 60 has been no longer avil, and I did better taking the 60's all day long rather than a one a day, I wall calling, emailing, pharmacy shopping. It's been terrible, finally Im staring at 180's at least by the same mfg and started on one at noon with my 60mg in the am till I ran out..... Took the 180 in the am and it was making me very ill. . . Stupid I thought I can take it later, so I heard Deb in my head and Ramona and Lisa, I took my Zantac before then an hour later the 180 and walah I could tolerate it. Now it wasn't enough, I was taking about 240 mg a day but can't take two 180's thats a lot more..... Finally I got disugsted one day I'd still been struggling. and I just decided the 180 in the am and I take another 180 at 5 and I've had serious improvement gastrointestinally. That's more than I'm sure anyone would recommend without a DR permission but I've had better improvement so I'm sticking with it. As I sit here flushing..... had to clean the carpet today, so Im triggering to the cleaning stuff. AGain I still can't eat poo, and still have my days, but my nausea has been under good control along with my gurgling moving intestines, my other Deb inspired knowledge is the Zantac upon that twinge of abdominal pain/trigger I know is trouble. I am learing to block It's not time, I've already taken two today, and realize I'm about to get much worse I'd better stop this. BAck on the financial front, if you have two vehicles maybe you can take one off the road for a bit until your husband is back to working more hours, that along with your penny pinching which you would not have as much time to do if you were at work running to daycare etc. May pay for you to stay home! Ok just reading your latest post, sorry! Look at the walls in the rooms behind your shower check for warped trim where water damage may be in the wall. Window sills around the caulking areas for mold, shower curtains, my killer was the shower door, we took it out and there is a channel on the underside that allowed practical mushrooms to grow. DH cleaned it out then filled it with silicone ( dry it oustide, I react to the wet caulk,silicones, they reek! get one that is mold resistant) also the washing machine it could be moldy inside the bin also.

Title: Re: sick of this!
Post by Sandi on 08/13/11 at 19:58:40

Amen Ramona! Your last sentences are my latest acceptance in my condition. I have to stop reacting and antihistimines are the only way to keep control along with the other avoidance things we all are doing! If a diabetic were going into shock and needed insulin however thought well I already had it once today, but the numbers said give yourself the shot they'd do it. Why we think differently is beyond me but we do!

Title: Re: sick of this!
Post by Riverwn on 08/14/11 at 05:53:07

Great example Sandi!!
Maybe thats why its easier for me to see--Im diabetic and insulin resistant and I need those numbers to tell me when to take more and how much to take :) Im so glad youre doing better.. I emphatically agree with 2 doses a day --and a third if you dont feel right.. Remember that Dr Castells advises meds every 6 hours while awake.. that must mean she has found that her patients meds arent lasting past 6 hours--that should tell us a lot!
Hugs
Ramona

Title: Re: sick of this!
Post by missybean on 08/20/11 at 04:10:03

So I was just wondering, does anyone get this pain in certain joints like knees or ankles where as soon as you get up to walk or put pressure on them it hurts? I'm having problems with my knees buckling and which usually the pain is tolerable and I have to walk slow. But at 3am this morning I got of to change my babies diaper and it hurt to walk. THis time, my right knee was slightly hurting but buckling and my left ankle was hurting pretty good. I took some Ibuprofen and it's a little better. It hurts to walk, I look like a cripple. I called the allergist to complain because the hives are getting really bad again and he DID prescribe me the ketotifen and I won't get it till the beginning of next week. So he prescribed a couple of days of prednisone thats it. If ketotifen doesn't help I'm really close to trying plaquenil or methotrexate to try calm all this inflammation down. THis sucks!
Melissa

Title: Re: sick of this!
Post by kimtg68 on 08/21/11 at 08:13:09

I get the joint and bone pain too. Sometimes it lasts for days but often it will start out when I have been sitting still for a bit and then get up, or go to pick something up or hold a pen. Sometimes I can work through it and sometimes I have to wait for it to decide to leave. It's definitely a royal pain!

Kim

Title: Re: sick of this!
Post by kimtg68 on 08/21/11 at 08:21:34

Oh and first thing in the morning when my feet hit the floor.... I feel like I'm 80 years old not in my 40's!