My Story

So glad to be here and for the kind words:-)

Here is a short version (ok, not really short) of my medical history. Was told it is good to share this for others to read:) Perhaps others share in some similar situations. Some of it may seem non-related to EM, but you never know, if one thing causes another I guess! Sorry in advance for spelling errors, etc.

1995- Went to an OB/GYN- Fertility Specialist to assist in getting pregnant. Went thru all standard testing (HSG, etc) and told my tubes were blocked and would need to be opened.

1996- Had laporoscopy to try to clear adhesions, and told when I woke up that adhesions were severe endometriosis (affecting uterus, tubes, ovaries) and would need to have open surgery to remove.

1997- Had open surgery (laporotomy) and many adhesions were removed, was told to try to concieve quickly as scar tissue often rebuilds.

1998- about 8 months post surgery, and a couple months on Clomid, I got pregnant. After 7 weeks, had bleeding, and miscarried. Was told to try again, but never concieved after that.

1999- referred to new fertility specialist, who started process for IVF (I did do injectable fertility meds) Had another laporoscopy to possibly remove tubes, since doc said it might help with IVF, turned out they were so scarred once he got in there, he left them in, but saw a huge ovarian cyst mass that had a blood supply to it wrapped around right ovary. He ordered immediate biopsy, but found no cancer, Left ovary and cyst in tact, because he didn't want to decrease my chances of future pregnancy. Said to proceed with IVF.

Never had IVF procedure (marriage stress which ended up in a divorce)

2004/2005, I would get flare ups in my hands. A finger or two would itch madly, get very hot, swell up then seem to spread, sometimes to the other fingers, sometimes my hands. After a couple years of hand swelling, I would notice my feet were causing me pain. I would get rock like lumps in bottom of my feet that hurt terribly to walk on, then redness. I did not have insurance at this point. But as soon as I saved enough money to see a doctor, she was baffled and had no idea what was causing the swellings and pain. Suggested elimination diet to see if there were food triggers. Followed elimination diet but found no relief. Even tried cutting out all food with nickel in them, as I do have a nickel allergy. Flare ups continued, but they were popping up every 2-3 months and I just dealt with it. This went on for years.

2008- I had always been cautious about not wearing metal buttons on my pants, fake jewelry, etc, but started getting hives on my abdomen and in area of my surgery. Creams didn't help, Tried many antihistamines, nothing seemed to keep them away or bring relief.

2010- Foot swelling increased dramatically. This is when I had to say goodbye to socks and all my shoes but my slip on open toe sandals. Walking for more than 45 minutes would cause immense swelling/hot burning in feet and ankles, hands would swell up with activity, and sometimes even without. Went to Disneyland and ended up in a wheelchair:-(

2011-today- Then my hives really started showing up, seemed more often right before menstrual cycle and during it. Tops of both legs, torso, arms, breasts. Finally had insurance again and over the next 2 years, doctor sent me to dermatology, rheumatology, and allergy for all sorts of tests. I have had so many blood tests. Had a positive titer ANA but it was only slightly elevated and next time they tested it was negative. Rheumy said she didn't think it was RA or Lupus, I did have a biopsy, but it was inconclusive, they were suspecting Urticarial Vasculitis. Allergist tried all antihistamines and doxepin, prednisone, more and more, finally said I had Chronic Idiopathic Hives, but couldn't explain the hand and feet issues, or would write them off as angioedema and hives. Said I probably had more than Urticaria going on and suggested I talk to my Primary Physician about the other things. Ugh. So much for working together as a team. I have a collection of photos I take from doctor to doctors so they can see all the flareups.

This is when I noticed a lump in my breast and was referred to a surgeon who removed cyst in 2012. Biopsy showed no cancer, but was told it may reoccur and sure enough it did. Having it removed tomorrow in fact and he will be removing a duct it is attached to as he thinks that is what is filling the cyst.

My hives and EM syptoms use to be more spaced out, but now it seems I have them 90% of the time, with few breaks in between flareups. Had big long flareup start Dec 2014 that didn't take a break until March of this year. I have very few uneventful days. I cherish them. My allergist just retored but said before he left that Immune Suppresents were probably the next step. Cyclosprine maybe. Have appt with new allergist/immunologist in May to discuss how to proceed next.

I also have suffered from Migraines since my late teens, thankfully they only occur once or twice a year. Often menstrual related. I have mentioned this to the specialists and asked if the migraines and flare ups could be a pregesterone sensitivity (boy have I done research) but they seem to think since flare ups also occur randomly and not always during my cycle, that it is probably not related. I have had my hormones checked and they appear normal.

Whew that was a lot..lol. Thanks for reading. Again I am happy to be here. Hoping everyone has a stress free day!

Dear pdxgal,

Thank you so much for posting.

My heart breaks for the emotional roller coaster you have been on . I think a couple of us share a lot of your story- inability to conceive, cysts, cancer, divorce etc..I suffered my whole life from endometriosis . I know you are in the Kaiser system (USA) but please check those Dr's I sent. It might be advisable to get a second opinion from an EM aware medic before knocking your immune system out. I attach an article on ciclosporine for you. A polypharmacy approach is advocated as. EM symptoms tend to be better managed as separate entities. Management is highly individualised , its a case of trial/error to find what works best for you . Saying that commonality re,specific firstline therapies given.

Firstline therapies - (1) Effexor or Cymbalta or Tramadol (2) Gabapentin (Neurotin)or Pregablin (Lyrica), (3)Diltiazem or Magnesium, (4)Aspirin , (5) Naproxen

Second line therapies - (1) Lidocaine patches/cream (2) Propanolol, (3) Tricyclics especially Amitriptyline (4)Opiates especially tramadol, oxycontin (5) Antihistamines- especially loratadine and cyproheptadine

Regardless of the type of EM you have, treatment options are the same.(attached articles for you).

You mention hormonal related migraine. Did you take triptans for that?. EM is often misdiagnosed as chronic urticaria- one of numerous differential diagnoses. Out of interest have you had an endocrine profile not just your FSH tested? EM can often be induced (secondary), after pregnancy, during menopause etc. There has been several reports of hormonal implications. - even after steroids and testosterone use..Second thing of interest is you mention hives on your stomach - area of surgery. Re: tests.These need really to be repeated as a matter of course. EM often rears its ugly head years before a possible secondary manifests e.g. lupus, RA.

The two pertinent factors here may be - hormonal and surgery, which would suggest your EM may be induced(secondary).

Whilst we are discussing your situation I would advise you really try to minimise as much as possible.

Minimise triggers:

Heat (and for some of us cold), fatigue, stress, exertion, pressure,foodstuff(spicy,stimulants or vasodilatory e.g. alcohol, chlli)

Lifstyle changes:

Temperature, diet (some foods might exacerbate ie deadly nightshades), no alcohol, reduce caffeine, pacing yourself , cotton clothing, barefoot, open sandals, no socks, etc.... Re: diet. Under foody facts you'll see some info on anti inflammatory diets etc.. The toxicity diet is a good free way of sussing out if any particular food pushes you into a flare.

Cooling tactics:

Sent you link to our list. If not its under cool tips. You will notice you get intensified livido leading up to a biggy flare. I have learn to 'read' my body lol! Some EM'ers need to cool flares or stay cold to minimise flaring episodes. Others will need to stay climatised in an even temperature.

In terms of treatments - old sodium channel blockers are proving pretty successful with EM'ers( lidocaine and mexiletine - Alina and I are on them) .Recent channelopathy research hails SCB drugs as the way forward for refractory pain such as EM. Two new EM drugs in pipeline are sodium channel blockers (novel topical and oral).

What I am trying to say is stay hopeful. I know how this hits hard (read my hysterical profile).

Please look at minimising triggers whilst medications being tested out.. You know the afternoon onwards is going to be bad so try to preempt that terrible flare. Rest and get cooling before it hits.

We are all here for you - bless you !

Sorry bit disjointed but still only able to use phone

Attached couple good articles for you :)

Post any questions and we will do our best to answer .

God bless <3

65-CiclosporinErythromelalgiainducedbypossiblecalciumchannelblockadeCiclosporin.pdf (69 KB)

Hi Mads, The only medication I have for migraines is Migranal. It is a nasal inhalant. I also avoid common migraine triggers esp around menstrual time, Alcohol, chocolate, fermented foods, MSG, etc.

My hormones were checked on a complete panel. They only checked those once, but all the other blood tests (cbc, ana, c3, c4, etc) have been repeated every 6 months or so to notice any changes.

I realized that I have more problems than I can keep track of because I forgot to mention my breathing issues in my story. I have had a cough for a couple years and bronchitis twice in that time. I get winded quite easily now. I have a referral for breathing testing next month, and was given in inhaler of Albuterol to use as my doc thinks it is asthma. I also get sore throats/swollen glands every few weeks. Last year I thought the sore throat was strep (used to get that a lot as a kid), but had a swab done, and it wasn't strep. Sore throat usually subsides after 2-3 days, if i rest and gargle with salt water.

I think that is all, LOL...gracious, isnt it crazy when you can't even remember everything cause there is so much! I know everyone here can probably relate to that.

I am enjoying reading everyone's stories, many are inspiring!

Hi there,

Apologise that im not well enough to get back on line properly. Just wanted to quickly respond.

Strep - quite a typical finding in autoimmunes. What were your ANA mildly positive for?

I had similar symptoms for 3 years and now positive for another autoimmune. Did you have your smooth muscle antibodies tested at all? B12? Zinc? Can i ask you about thyroid again?

I got to come back to migraines- sorry ;) . Migranal is an ergotamine ,which is a vasoconstrictor.. Whilst EM is essentially due to vasodilation, vasoconstriction can affect. How often do you use? Might have developed a hyper sensitivity and medication induced EM can take few years sometimes to manifest.My issue here is that this medication is know to cause pruritis (urticaria no less ;) ), and Raynauds syndrome.The flares are hot , burning etc...... but do your limbs/digits also blanch.? Raynauds and EM so intertwined they are often confused. Just thoughts lol!

Big hug

x

Hi Mads, The ANA test I had was not for a specific disease. It was a "Titer" ANA. So it doesn't give a specific cause (disease result) It only shows on a scale a negative (low numbers) or positive (higher numbers) for appearance of Antinuclear Antibodies.

I do not know about the smooth muscle antibody test, I don't think I have had that done, unless it is called something else. I will have to check into that. My B12 when checked last was 260 pg/mL, (shows range of 180-914 pg/mL to be normal) Almost positive I had a Zinc test, but cant find the result, it would have been normal or I'd remember it. Thyroid panels have been 3 times and are all normal.

I have only used my Migranal for Migraines 1-2 times a year, and have only used it 5 times total in the last 3 years. It is interesting that Migranal is an ergotamine, but I had ED symptoms and Urticaria years before I started the Migranal. Prior to the Migranal, I had no insurance, so I was not on any medication.

I really had to think about the blanching question. At first it is red, very red, this is the case in hands and feet...itches to the bone, maddening! Then it burns, like a bad bad sunburn, stings...and swells. Now because it seems like the swelling is causing fluid to build in flare areas, it does turn white, esp with pressure, even touching it, but I would not say the skin loses color, without pressure. Once the fluid rushes to the flare up, the itch is still there, but the burn really takes over and it starts to ache (in my joints) It radiates heat, my spouse can hold his hand inches from a flareup and feel the heat. Often there is so much pressure from the fluid that my skin rips and bleeds. This is especially true on toes, ankles, sometimes fingers. What has thrown most doctors is often , it moves. It might start in 2-3 fingers, then 12-24 hours later it spreads down into palm (all the way thru, top and bottom of palm are red), then next day to other fingers, before calming then popping up in a foot or the other hand a few days later. I am not affecting by cold, but heat and pressure sure aggrevates it.

Though it is possible they are related and even though I had the EM symptoms long before Urticaria started, I have had the EM issues with and without the Urticaria, I do not have them both every flareup, but every so often Ill have a few hives and EM symptoms simultaneously.

I so appreciate all your thoughts! Was so nice to see your message. I went in for my surgery today and got prepped and all, waited, waited, doctor got tied up from previous surgery so I'll have to reschedule :( Oh well...I got hospital slippers as a parting gift, LOL. Thanks again and I appreciate you taking time to read my craziness and offer your support! I am so sorry you are not feeling well:( Please rest and recharge!

OH NO! Bless you. How terrible for you to psych up for an operation only to be let down!

You say hives and EM, but EM involves 'hives' symptoms. EM is often misdiagnosed as hives or urticaria. What differentiation are you making here? EM symptoms are much more than hot burning. Symptoms include redness, swelling, burning (hot or cold), itching, livido rashes (like nettle rash), breakdown in skin, aching joints and list continues. One can have EM for years before it starts to really impinge adversely on ones life. Re: blanching, you would know if it blanched naturally ;) Alina , Nel and i comment on how EM travels or 'morphs' from one place to another. Weird that we use same terminology.

ED symptoms as in eating disorder ED or Ehlers Danlos ED??????? Or is it typo for EM ?

Dont think your story was shared yet was it ? Lets try again to get you some more responses :)

Biggest hug

Thinking of you

x

Sorry about the ED typo, it was supposed to be EM.

The only differentation I am making is I didn't think EM could be all over your body. I thought EM was usually just hands/feet/knees areas. I get my hives/welts on my breasts, torso, arms, legs, lips, sometimes my back, even my head, in addition to the flare ups/swelling on my feet, hands, knees, etc. I rarely notice actually welts in my hands, feet, knees, just intense swelling/itch, burning, edema. All other places get welts, well except my lips. They just swell and go numb. I get the aching painful joints for sure/sometimes with flare up, sometimes on its own. Sadly, there are so many things that mimic symptoms like these, and process of elimination takes so long:( Seems like every time they say, well we know it isn't this....that a new set of symptoms present.

Of course, I have no medical degree, so for me to say I know that I have EM, would be such a long shot. I spend so much time researching my symptoms, all while discounting 99% of things I find, as I know that our minds can get the best of us. The only thing that caused me to look into EM being a possibility, is the photos I had found online and symptom list was so on point with what I experience. I feel like I am doing the work/research that my doctor should be doing for me, but I had such a lapse when my doctor retired and waiting for this appointment with new doctor, I feel like I have to do something. 3 more weeks and I will get to go see the new allergist/immunology. 3 weeks to my doctor is different than 3 weeks to me. If you know what i mean, when you are in pain, every day is too long.

Yes, I typed out my story and posted as discussion...was really long, LOL. In fact, it is the first post in this discussion thread we are corresponding on now. Thanks again for your advice and insight. It is all very helpful. Hugs!

Hey again :)

EM can be systemic. Alina and I (and many other members) have widespread EM.

Something occurred to me. I was tested for antiphospholipid antibody Syndrome (APS) due to fertility issues, migraines , livido etc... Do you know if you were tested?

Why dont you consider contacting one of those EM aware Dr's on the list we sent you?

Big hug

x

PS: Has surgery been rescheduled yet?

Hi there. I was really interested to read about your chronic idiopathic urticaria. When I was living in India I developed a severe allergic reaction and was hospitalised there with it. Was treated with IV antihistamines and IM adrenalin which bought it under control. However three years later I was still breaking out in hives. After moving back to NZ it finally disappeared. Saw a specialist in Bombay who said I had an allergy syndrome??? I have been wondering if this was related to me developing EM. I had read those with CIU are more likely to develop Lupus and other diseases in the auto immune category and wonder if my EM is auto immune triggered.

Wow. You have gone through so much! I am so sorry.I am late reading this so you already had your surgery.I hope it went well and this fixes it once and for all. I have gone through most of what you have for treatment such as antihistamines and elimination diet reorganization no relief. I hope you find something to help soon.

Hi Mads:) Very interesting I did not know EM could be systemic...when this is the case, does it cause actual hives/welts like Urticaria? I have not been tested for APS, at least not since I started having symptoms. If it is something my fertility doctor had tested for years ago, I don't recall.

I would actually love to find a doctor more qualified to treat EM, but I have to stay in the Kaiser network or it would not be covered at all. I would have to pay 100% out of pocket and I am not working:-( My new doctor that I see in a couple weeks might very well be familiar with it, but I won't know until I meet with him. Of course, if he isn't, I have the handy info here to show him and refer to.

I am going to call and reschedule surgery after my new Allergy Appt. It isn't of urgency and my hand where my IV was is still flared up. I have some concerns that my body isn't going to handle this surgery as well as it did last time, as far as flareups post op. So I am going to need to bring that up with both the new doctor and the surgeon. Thanks again for your insight:) Hugs~



mads said:

Hey again :)

EM can be systemic. Alina and I (and many other members) have widespread EM.

Something occurred to me. I was tested for antiphospholipid antibody Syndrome (APS) due to fertility issues, migraines , livido etc... Do you know if you were tested?

Why dont you consider contacting one of those EM aware Dr's on the list we sent you?

Big hug

x

PS: Has surgery been rescheduled yet?

Hi Heidi, that is interesting. I have been tested for lupus and many other auto immune diseases, sadly no answers yet. Although I have a dear friend with Lupus and it took her years to get a diagnosis, because it mimics so many other things. I know that CIU can stem from so many things, that often it remains idiopathic and no cause is ever found. I have never heard of the term "allergy syndrome". Sounds like a broad diagnosis:) I really don't know if I have EM, have only recently heard of it, but I do feel whatever it is affecting my hands feet, knees, is related to my hives. I do know that some here on this forum have issues that could be considered autoimmune, so I am as interested as you to see how EM issues are tied in with autoimmune disorders. So you are hive free now and only have the EM issues?

Heidi said:

Hi there. I was really interested to read about your chronic idiopathic urticaria. When I was living in India I developed a severe allergic reaction and was hospitalised there with it. Was treated with IV antihistamines and IM adrenalin which bought it under control. However three years later I was still breaking out in hives. After moving back to NZ it finally disappeared. Saw a specialist in Bombay who said I had an allergy syndrome????? I have been wondering if this was related to me developing EM. I had read those with CIU are more likely to develop Lupus and other diseases in the auto immune category and wonder if my EM is auto immune triggered.

Hi Alina:) Thank you for your kind words. I actually didn't get to have my surgery, as after I got prepped, my surgeon was running very late from an emergency with his prior surgery, at another facility. So rather than wait for another couple hours, I opted to come home and will be rescheduling it. It was not urgent. It is so nice to meet others who have been thru the same things. It can be a very lonely condition! Everyone here has been so kind and understanding. We are fighting the good fight together:) Hope you find relief as well. Thanks again Alina! Hugs~

Alina Delp said:

Wow. You have gone through so much! I am so sorry.I am late reading this so you already had your surgery.I hope it went well and this fixes it once and for all. I have gone through most of what you have for treatment such as antihistamines and elimination diet reorganization no relief. I hope you find something to help soon.

Yes thank you. No more hives. It was a combo of hives plus a very full on rash which I will put a photo up of. Often when the rash came up the skin behind the rash was blue. To be honest I was in a charity hospital in the wops in India so wasn’t expecting a decently explained diagnosis. In fact when I returned to NZ I googled some of the drugs they gave me and read they were sedatives!!! ??? They did those allergy scratch tests and said I was allergic to everything including rubber!!! The hives did continue for more than 3 years and were very random. Looking forward to hearing how you get on. Love Heid



pdxgal said:

Hi Heidi, that is interesting. I have been tested for lupus and many other auto immune diseases, sadly no answers yet. Although I have a dear friend with Lupus and it took her years to get a diagnosis, because it mimics so many other things. I know that CIU can stem from so many things, that often it remains idiopathic and no cause is ever found. I have never heard of the term “allergy syndrome”. Sounds like a broad diagnosis:) I really don’t know if I have EM, have only recently heard of it, but I do feel whatever it is affecting my hands feet, knees, is related to my hives. I do know that some here on this forum have issues that could be considered autoimmune, so I am as interested as you to see how EM issues are tied in with autoimmune disorders. So you are hive free now and only have the EM issues?

Heidi said:

Hi there. I was really interested to read about your chronic idiopathic urticaria. When I was living in India I developed a severe allergic reaction and was hospitalised there with it. Was treated with IV antihistamines and IM adrenalin which bought it under control. However three years later I was still breaking out in hives. After moving back to NZ it finally disappeared. Saw a specialist in Bombay who said I had an allergy syndrome??? I have been wondering if this was related to me developing EM. I had read those with CIU are more likely to develop Lupus and other diseases in the auto immune category and wonder if my EM is auto immune triggered.
64-image.jpg (1.32 MB)

Rash
63-image.jpg (1.35 MB)

Thank you for sharing your photos Heidi. I am so glad that the hives and rash stopped for you. Some of mine bruise but not all of them, depends on where they are. I will probably post some of my photos of my hives to my page here in the next couple of days, just in case anyone else may identify with them.

Ahh yes, scratch tests. Those are tough, because I think in many cases, if your body is hyper-responsive, you will show a reaction to everything they test you for.

Thanks again for sharing and I do hope to stay in touch with you and hear of your progress as well:) Hugs!