Help me now please- in great distress

Support
1

BLOWING UP CONTINUALLY. NO PAIN RELIEF. LOST THE WILL TO LIVE. SURVIVING IN BED WITH 63 DEGREE AIR CONDITDIONING. BARELY CAN GET TO BATHROOM. FABRICS CAUSE PAIN. TOTAL BODY TEMPERATURE DISREGULATION. NO FUTURE.

DOCTORS NO NOTHING, JUST HOW TO SEND ME TO ANOTHER DOCTOR.

LIVING IN DESERT AT 98 DEGREES OUT, AND TRYING TO GET TO DOCTOR IS TERRIBLE. TRYING TO TAKE SHOWER IS HELL - AND I GET DIZZY.

AFRAID TO GO TO EMERGENCY ROOM - NO ONE KNOWS ANYTHING ABOUT EM. WENT TO DUKE, UCLA, & CEDARS SIANI DOCTORS. NO TREATMENT. FEEL SICKER EVERY DAY.

IF THIS IS THE COURSE OF THIS ILLNESS - AND PAIN CONTINUES, IT IS NOT WORTH IT. I DON'T UNDERSTAND ANY OF IT. WHY ME?

I NEED OUT OF THIS.

PLEASE GIVE ME SOME IDEAS.

OTHER ILLNESSES:

EXTREME INTOLERANCE TO HEAT (FOR MOST OF MY LIFE)

CHRONIC FATIGUE SYNDROME

RAYNAUD'S SYNDROME

CHILLBLAINS

ERYTHROMELALGIA

VARICOSE VEINS

CARPAL TUNNEL SYNDROME-BOTH WRISTS

HX. OF KIDNEY STONES

HELIBACTOR PYLORI – TESTING NOT COMPLETED

IRRITABLE BOWEL SYNDROME

SPASTIC COLON

HASHIMOTO’S THYROIDITIS

GASTRIC RETENTION

DEPRESSION

ANXIETY

LACTOSE INTOLERANT

POSSIBLE CELIAC DISEASE – TESTED – NO RESULTS YET

ACHILLES TENDONITIS - RT FOOT

DIABETES - NOT TREATING YET - ONLY WITH DIET

HIGH CHOLESTEROL - NOT TREATING YET

SEVERE DEGENERATIVE ARTHRITIS IN BOTH HIPS

MULTIPLE CHEMICAL SENSITIVITIES

2

Dear Twinkletoes,

Just saw your crisis message.

Please try to calm down ! The terrible anxiety you are under (bless you) is just exacerbating the flares.Why dont you take up our offer of giving you names of an EM aware medic to access in CA area? First step is official diagnosis with someone who will try to better manage your symptoms .I know you have Raynauds and many other conditions. Who gave you that calcium blocker IV you mention in profile? Who gave you the compound you use? Are you rebounding Beth to that Lidocaine, Ketamine, and Neurontin compound? Has something else suddenly triggered this crisis? Where are you flaring?

Imperative to get you some symptomatic relief by minimising triggers . So soak a cotton sheet in cold water - wring it out so damp and wrap yourself in it. Get under fan on full blast. It will cool the flare. Stay there and slowly calm down .When you can send me your number (private message) and Ill call you. or Tizzy has kindly offered her support . Easier for me to talk than type as im just out of hospital myself.

Agree with tizzy- you sound at risk. We are very concerned about you. Please Beth dial 911 and get to an ER. Download some of our info under new members about EM and TEA's brochure to show to Drs at ER. If nothing else they will give you a shot to calm you . This could be the route you need to take to get that help?

Many of us have this 'crises'. You are NOT alone. Remember you are NOT alone.

Stay strong

x

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Dear Twinkle Toes,

I also wanted to teach out to you. I know how scary it can be to feel overwhelmed by all our symptoms and feel like you just can't take it anymore. But everyone is right- if you really feel unsafe you should call 911 or go immediately to the ER.

Mads is right - the anxiety alone drives the flares and the EM and can raise your core temperature which then makes the whole thing a vicious circle.

Please stay strong and reach out in real time!

I am praying for you!

Jordy

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TIZZY, MADS,JORDY,

Thanks so much for your support. I will post and reply to you all as soon as I can get some pain relief in my fingers to type more.

You are my EM angels!!!!

Beth (AKA Twinkle Toes!!)

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Dearest Beth,

You have my number. Whenever you are ready and feel able to talk or type............ OK. We ALL go through horrible crises. First and foremost ,please remember that you are not alone. You have your EM family here at Bens Friends.

We are all thinking of you.

God bless

mads x

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Hi Beth,

I haven't visited this forum for a couple days or I would have responded earlier to let you know i am thinking of you and hoping you are doing better.

Blue.

7

Dearest Twinkle Toes. I am so sorry. I am sorry you are having to go through this and I am so sorry for my not being here when you first posted. I myself have been having a hard time of it and have been off the computer for a few days.

Like so many others have said already YOU ARE NOT ALONE. We are here for you . I understand some of what you are going through. I had a patch similar to yours a couple of years ago. Severe constant pain all over my body. I couldn't sleep because of the constant pain and that made things that much worse. At this time I didn't know I had EM and was not only going through all of the pain but the doctors wouldn't listen to me and often called me crazy! even when they could see the redness all over my body they just said I should change the soap I used! My feet became so swollen I got sores all over them and my toenails fell off. My mother had to fly up from california to care for me because I couldn't even get to the bathroom on my own. All day all night nothing but crying.

Enough about the bad stuff. After about 6 months without medication , about 2 months before I got an EM diagnosis. It suddenly and on it's own just got better! It didn't go away but became much more manageable and something I could LIVE with. Before I wasn't thinking of ending things but I was thinking that if something happened to me and I was to leave this place it would be a good thing and I would welcome it with open arms. I wished they would admit me to the hospital and put me in a comma till they could figure out a way to make it stop.

In the past few years my symptoms have fluctuated usually over a few months at a time getting better and worse but I have never been that bad again. I now have a reasonable amount of pain. Funny...reasonable amount of pain! I can't live a normal life at present but am not suffering 24/7 . I keep my house between 60 and 63 degrees and colder at night if the weather will let me. I rest in my recliner most of the day getting up to do things in 5 to 10 minute increments. I can go to a store for 5 to ten minutes if the weather outside is cool enough. I sleep in my recliner because it is cooler than my bed because of both the bedding itself and my husbands heat. In the winter I can sleep in bed again by sleeping with the window open and a fan in the window to sucks the cold air in even when it snows!

right now I still need to use a fan or chillow for spot treatment even in 63 degree temps but usually not until the evening or if I push myself past the 10 minutes of activity. I do have periods where I am better than this and can stand temps closer to 70 if I am not trying to be active. I am still experimenting with treatment options to get even better some day. I know this life doesn't seem glamorous but when you have lived suffering so much for so long it is such a relief and something to truly be grateful for.

As far as my doctor appointments I always schedule them for early morning before it warms up outside. Even if I have to wait a bit longer for the appointment it is worth it. In order to be outside we have put a recliner on the back porch which is shaded as well as a big fan out there and water misting tubing above. This allows me to sit outside a bit if not too hot.

I have lost my job as a flight attendant of almost 20 years but have found purpose in helping others here and I know it's not productive but couldn't live without my netflix! You can watch episode after episode of your favorite shows and when watched one after another it really sucks you in and is a welcome distraction. I don't feel bad about my excessive netflix watching one bit! My priorities have changed so much. I Still do my best to help others and that brings me such joy but the rest of the time I just do what brings me joy and or distraction in an effort to minimize my pain. The day I can do more I will .

Sorry for such a long post I just wanted you to know there are others out there that have gone through similar challenges and most importantly I wanted you to know it can and does get better. There is hope. I thought I had no chance of anything else and here I am actually having good days and living to the point I can still find joy in life. It may not be what used to bring me joy but joy none the less. I know this day will come for you too if you just hang in there.

Please feel free to message me if you would like to chat when you can. I too would love to talk on the phone with you and will give you my number in a private message. I can call you because it is free for me. I would call anyway! It might be easier to talk on the phone because of the terrible pain and swelling in your fingers.

Take care of yourself Twinkle Toes. I hope to hear from you soon :)

Alina

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Just to let everyone know that we have given Beth an extensive list of EM Dr's in CA. She has informed me she is phoning some of them right away to make an appointment.

Thank you all for being so support!

We are the best ;)

God bless

Mod team

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Dear Beth,

Hang in there. I know that living in constant pain is also mentally unbearable. Once you have found the right doctor there will be different treatments for you,which will make life less despairing,honestly. Once this crisis period passes for you,I also recommend using meditation techniques which are designed for pain. Can talk about this at a later date. . I hope knowing that there are people who understand and share this nightmare,will give you some strength. Please let us know how you get on. All best wishes.

Caz

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Hello again Twinkle Toes.
I see we have had more members offering up encouragement and tips on how to deal with this. Thank you all for the support you are giving her! I also want to caution you against ice water submersion. I know it feels great and helps with burning but long term water submersion and long term exposure to ice can be dangerous even causing loss of limbs in extreme cases. Spritz water on you and turn the fan on is almost as good but doesn’t pose the dangers of submersion. Chili pads and Chillows are also helpful tools. I even found slippers with built in gel you can warm in microwave or put in the freezer to cool. Of course I use the cooling method. If you can find something like that they can cool your feet as you move about the house. We all have different methods of dealing with this and I hope you will get others offering up more suggestions. Maybe I will learn something new too!
Hang in there,
Alina

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Hi there! This is TimR who mentioned icewater submersion. I too was warned from my doctor about submersing my feet in ice water. I did it anyway. I would remove my feet periodically and dry them with clean towels and then back in the drink. I nicked my feet a couple times and those nicks took some time to heal. I am now over two years past the time when I soaked my feet. After the four months of soaking I thought I had done some nerve damage, but whatever was there is slowly dissipating.

Look your doctor in the eye and ask him what the risks are. Then ask him for treatments that WORK. For me, the ice water worked while he frantically searched for other remedies, which in my case was the Tegratol XR. Once he found that I was able to stop the ice baths.

Like me, I'm sure you are willing to try anything reasonable. Wet cotton clothing in front of a fan might help. Wet cotton dissipates heat over 40 times faster than wet skin alone.

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I’m so glad Time you were able to find a med that helped! You are so right about the wet cotton. That’s why so many use wet cotton sheets with a fan. I know everyone finds different ways to find relief and it is each persons choice in how they do it. I thank you for sharing what has helped you and don’t Want you To feel attacked in any way for us mentioning the dangers of ice water. We just want everyone to have all the facts as best we can about treatment so everyone can make an informed decision.
Thank you again for sharing TimR.
Take care,
Alina

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I agree with the idea that It would help a lot if you got your pain under control first and then found different ways to take your mind off what your body is feeling like. Try to believe that there is others who have felt the pain also and have come through the other side. We are here for you .. Brian L.

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Hello, you are so not alone. G-d I wish we could all be together in one giant support group. I have many many problems and continual acute pain and have not found a way to manage it. I have interstitial cystitis; bladder/pelvic/urethral and vulvar pain,maybe also pudental neuralgia- it is sheer hell. A bunch of other stuff too .... there was a song by Buffy Saint Marie, "you'll feel like you're dying and wish you wer dead". I mostly don't write here as I don't wish to drag others down. But my hear an prayers are with you... the worst it thinking you are the only one suffering to such an extent, you are definitely not... I don't know why life must be like this for so many of us, I do believe many of the illness we have in this group are overlapping and involve our autoimmune system which makes the worst periods EPISODIC in nature. The disease are devastating and damaging but the worst periods maybe can be precieved as EPISODIC. The pain and malaise are unbearable and unrelenting sometimes for very long periods, as in weeks or even months then it might move to another area of our body and become more or less manageable. I tell myself over and over this too shall pass and even though I do not expect to be healed or for the pain not to continue, I try to believe that G-d is merciful and will at some point make it bearable again so I can function and fufill my purpose on this earth. I have at times cried out to G-d that I am merely flesh and blood and He is expecting too much of me. It helps to cry out to the only being who could really know what you are suffering. I am glad people have suggested to check into the hospital, that is probaly agood idea, and I will keep it in mind for myself for the future. Just please choose your hospital carefully, talk to people and get a good recommendation for one even if it is out of your area.. There are some very bad hospitals out there. My mother was in Norwalk Hospital in CTfor a long time and it was like a concentration camp-one of the worst hospitals in the country and she died there. Please know you are not alone and even though there may be no cure, the worst times come nd go .. I wish you relief from your suffering and peace and comfort in the days ahead...with kind and loving thoughts,Leah

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Well, Thanks, Twinkle Toes, for letting us know about how you are distraught with. So very much that you have on your list, besides EM that you have to contend with..Think, possibly your support system on an everyday basis is lacking.....Like, if I didn't have my husband to complain to, even though he's hard of hearing,, It would be so much harder to cope. Also an adult daughter who lives far away in another State is a patient ear & at 39 yrs old, even though she has RA ( full blown rheumatoid arthritis). So, I pray , that you have another person who is there with you or nearby , even via telephone, to at least sympathizes a little bit...Prayer does helps some & You will be on my prayer list now that I know that you seem to be suffering so very much.. And, cry out to your God, each & every day, believe me, He is listening.....When it comes to my EM, which is on my feet, I had to seek out by myself what helps me to cope for what can be, or is a debilitating problem for so many here & others.....When my feet burn I found that a liquid stomach antacid, diluted with a good quality water put directly on my burning foot areas help me & mixing that with a moisturizer,, be that Vaseline or something that agrees with you..Just recently, found too Rosehip Oil, organic with, no fragrance helps...Found out taking a tepid bath(no way near hot) with it in the bath water helps this & other problems like dryness..,

.I am in my 60's & do have H.pylori, varicose veins, MCS (multiple chemical sensitivities, like a burning face from certain odors, etc, think make my face burn,as long as 24 hrs not sure if it's a form of EM, or could be a form of rosacea , or in your case something different & think you know what I'm trying type about this.& what chemicals can do to ones body, as though who are so sensitive to them.. What I use on my feet now helps me for this, & too taking antihistamines. Also have a thing called BMS...Spinal lumbar back stenosis, significant lumbar back scoliosis, at least 2 herniated lumbar discs> These 5 spine problems diagnosed all listed on May 1st 2014..Also, osteoarthritis arthritis in both feet & knees. Last week diagnosed with 2 big eye cataracts in both eyes that I was told by the ophthalmologist I have along with the cornea dystrophy diagnosed since 1994...I take a lot of homeopathics to cope for all these problems..Noxicare capsules & found out that helps with the bones... There are so many others out there,,,for bad veins, the list goes on & on....For pain,that is reasonably priced is a Swanson,Brand, homeopathy, Pain & injury relief which are small pills that dissolve under the tongue.

Have you gone to a Neurologist, to test for peripheral neuropathy, in your legs or feet?..I have an appt for that coming up in October for my legs...Because I suspect I have that or some type of nerve problem,, Though am not at all not looking forward to that needle test...I have a vein doctor here who wants to strip my legs of the varicose veins with EVLT, though am very leary, as because have had sclerotherapy treatments done years ago that has left me with sensitive calves to just touch, even a little...I use Noxicare on my calves for this, though not on my feet..

Best of luck to you from answers here & God Bless You in Your Struggles, Each & Every Day....Caressa

..

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Oh Twinkle, I am soooooooo very sorry that you are going through so much physical and emotional pain right now.
I’m also very late in responding, so please forgive me! I have not been very consistent on email due to my own EM pain flares (GAH!).
I agree with the others here, I’m worried about you. Chronic pain can invade every breath you take, every cell of your being.
Allowing yourself to be in such high stress will only make the pain and swelling so much worse, believe us on this.
Breathe slowly, try to incorporate visualization when you are ready. For me, I try to think ‘cold thoughts’ of snow and rain and brisk cool breeze. And when I’m too wired up with pain to do that, I watch cold themed movies. ANYTHING with a cold wintery theme will do. And I avoid any hot, humid tropical movies like the plague! you get the gist?).
Just know that you are not alone. We all care about you and want nothing more than for you to feel some relief ASAP!!!

Can I also admit that I started to weep as I read your post? I could relate on so many levels. I was lying on my husbands bed in the AC cooled room, with ice packs on top of my lap, a cold soda next to me, watching Netflix on my iPad. I can’t be in the living room since it’s over 64 degrees, and I’m battling with major swelling and pain too… HUGE gentle hugs to you.

Please do keep us posted on your progress!!!
Pesto

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I know what you are going through as I have Ethro myself. I have terrible swelling feet and ankles. I have found some relief with real tight hose, knee length and ice. Also, I get a message three times a week that is heavy reflexology. It has to be a good message therapist. I keep my feet elevated and also use a deader cream that was posted on foot steps last issue.

I hope this helps you.

Betty

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Hi Guys,

Just to say that mod team are going to ask our Miss Tizzy to do a special discussion on this topic. We will also pin the post to our information for new members . Icing friend or foe is a topic close to the heart of all EM'ers.

Thanks ((((((((((((Tizzy))))))))))).

Also- if anyone has any articles or posts they would like to share please let us know.

Wishing all the EM family a 'comfortable' night

God bless

mads

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Hi,

When this first started for me about 12 years ago I started having very cold showers periodically during the day. My gp at the time, did not know what was happening to me but told me to stop with the v cold showers as although it would calm the burning it would result in my body working to over correct the cold and my core temp would increase - thus making me hotter. And leading to me needing to have a very cold shower again. He was right. In my case, at least.

I started having tepid showers, was able to stay under them longer and it was, overall, better for me.

The specialist who diagnosed me with EM 8 years later told me not to rest my feet on an ice pack, citing nerve damage, so i stopped. I have read that one should not use ice but can understand why some people do. I think in my case it was the right thing that I stop. But I would like to read more about the 'to ice or not to ice' story.

Blue

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Hi ,

I,m not sure about location/temperatures. I used to think winter was the worst for me but I just had a very uncomfortable winter, EM wise, then I traveled north about 10 hours drive(just got back), about 2 hours drive

south from where tizzy lives. It's spring but quite warm up there (not hot yet) but apart from one night where I was too hot (hubby snuggled under feather down quilt) I actually had no real burning going on at all. I was red at times and often felt too hot, but no burning.. There was a fantastic cooling sea breeze blowing night and dayalthough on the night I felt too hot the v breeze had dropped off somewhat, and as soon as I got out of bed that too hot feeling went away. I was bemused that the burning pain of erythromelalgia had all but diminished. But I was dealing with strong POTS symptoms, instead. I always find it hard to manage POTS when

I'm away. I was dealing with a lot of stress ( one member of my family who was holidaying with us is very illand frankly I'm very frightened about this). I got only about 2 hours sleep at night, most nights because of anxiety and excess adrenalin. Breing in tha

t state is going to make POTS worse, but usually makes my erythromelalgia worse too. It just didn't happen. I did wonder if I've seen the last of EM (DOUBT IT AFTER 12 YEARS, But who knows? Fingers crossed.). We got back about 20 hours ago and EM has not been painful, although I am still flushing red in different parts of my body. Just no burning.

I'll keep everyone updated. Erythromelagia was always worse in summer than winter for me but this winter I continued to battle with it. Maybe summer isn't going to be so bad after all, fingers crossed.

blue