What I do when…............?

Support
1

What I do when…............?

The purpose of this post is to compile a Q&A sheet on several topics related to EM and/or EM- related conditions. The more diverse the 'tips', the more likely it is that you can find something you have not tried or something which is perfect for you!

So please get involved and add tips , suggestions and/or new questions.

Thank you!

Please note that these 'tips' are not medical opinions or suggestions. All responses are personal experiences from LWE community members.

What I do when .............................?

1. I am experiencing flare ups

2. I am feeling down/lonely

3. I feel my pain is starting to get worse

4. I have to explain about my EM/EM related condition to ...........( Job, friends, family, acquaintances: all require different information so please differentiate )

5. I want to do ............ but I cant (Name activity)

6 .I dont feel supported

7. I feel like going crazy both physically/mentally due to pain

8 .I cant relax due to my pain

9. I have a Dr appointment but dont know how to prepare myself (e.g. what to ask)

10. My Dr is not supportive of my desire to make changes in my medication

11. Add other suggestions, tips, questions

2

Thank you so much Veerla for starting this post. I am sure many people will find tips that will help them cope. Any day now I am getting my compute r back and will be sure to include what helps me when typing it all out is a bit easier. I just wanted you to know how grateful I am for your desire to help all of us here :slight_smile:
Take care,
Alina

3

.Thanks Veerla - great idea. Great post!

Big hug

x

1. I am experiencing flare ups

Minimise my triggers - heat or cold. I always opt to stay cold despite it also triggering EM flares and Raynauds. Its the lesser evil.

Minimise other triggers I know affect me - , fatigue, exertion , stress(pretty impossible)- through rest/sleeping

Cold bath, wrap damp cold bed sheet around me (naked), and lay on bed under cold air fans on full blast. The dampness retains 70% more chill.

Naked, barefeet

Frozen gel packs wrapped in towels . I never ice though

Smother myself in lidocaine gel

Mostly i can doing nothing and cope by drugging myself out of it with morphine/sleeping tablets

Prayer

I cry

2. I am feeling down/lonely

Try to accept that today is a bad day- however hard.

Prayer- Read one of my inspirationals ,which remind me that I am never alone:-)

Mostly, I drug myself out of it and sleep - have to be truthful

Call my mum or one of my besties(but when we are down we tend to isolate ourselves even more)

Come onto Bens friends LWE community - you are my EM family. Always someone to share with or email

Phone one of the 'blessings' in my life - New friends all over the world who really care about me. I never would have met you without having EM.

Allow myself to feel sorry for myself and cry. Crying is good- releasing all that negativity.

3. I feel my pain is starting to get worse

Minimise triggers - heat/cold, fatigue, stress(hard to do), exertion

Cold bath - naked get under fan

Drugs, drugs, drugs. Drug myself up and knock myself out - sleep

Prayer

Cry

4. I have to explain about my EM/EM related condition to ...........( Job, friends, family, acquaintances: all require different information so please differentiate )

Found EM so impossible to explain so I frequently dont bother and just say horrible rare widespread pain disorder. Maybe i should type up a list like a business card to hand out lol! However, I have TEA brochure (that I downloaded ) and 2 research papers that I hand out to whoever seems interested or cares enough to read it. Once they see the photos or my flaring - sort of hits home. Man on fire syndrome + frozen man syndrome= pain, pain, pain . Think people get it.!

5. I want to do ............ but I cant (Name activity)

Disabled and exhausted by EM so pretty impossible to do anything. Had to accept this 'new identity' but I can tell you its hard and I ......hate it!.

I want to have ' life' as I knew it ....but I cant - e.g. work, travel, holidays, go shopping, drive,exercise,walk, socialise, write,have hot bath...so many things.

Try to focus on doing what I can from my bed - internet, phone, read - I type with one finger.

Believe in hope and miracles

6 .I dont feel supported

Truthfully, I dont think many EM'ers feel that well supported, I certainly dont. Rare disorder which is terribly isolating.

Log onto LWE community, TEA and FB sites .

I volunteer to offer support to others - ends up being reciprocal.

Raising awareness is so important.

7. I feel like going crazy both physically/mentally due to pain

I am now crazy! Border on hysterical somedays lol! I scream, I cry.

Take a sleeping tablet - knock myself to sleep

8 .I cant relax due to my pain

Constant state of anxiety due to autonomic dysfunction is part/parecel of this syndrome. Drugs, drugs, drugs and knock myself senseless

.

9. I have a Dr appointment but dont know how to prepare myself (e.g. what to ask)

Download information for new members off this site

Print off TEA brochure

Take photos of flares

Pain diary and symptom diary

Write everything I want to ask/say down

Take family /carer or friend with you for support

10. My Dr is not supportive of my desire to make changes in my medication

Take all of the above- download information, photos etc...

Research articles on that medication

Evidence of clinical trials

Scream at him and get labelled hysterical and crazy lol!

Threaten to complain

Find another more compassionate Dr (not so easy)

11. Add other suggestions, we tips, questions

Will add later date

4

What do I do...when...

1. I experience a flare up: Try to get to a cool place, make sure that there is no sun or too much light, try to stay calm

2. When I am down and lonely: Sometimes "surfing" the net makes me more down and more lonely, and I have to beware of Facebook when I am down and lonely. Too much happy...too many people with a life I don't have anymore so it can be a self pity nightmare for me...so one thing I do is stay away from Facebook when I am down. I put on some music, have a cry if I need to, even if crying causes my facial flushing to go beserk...so I save letting myself cry when I can't not cry anymore. I try to find some humor somewhere, something to make me laugh. I try to remember that emotions are like clouds...they pass over. I do mindfulness meditation. I try to reach out to someone else who might be hurting.

3. When I feel my pain starting to increase: I do mindfulness meditation and visual imagery exercises. I deep breathe and relax as much as I can.

4. When I have to explain my EM to someone new: I have severe Raynaud's with the EM, so it is the easiest for me to just tell them that I have a rare disease and it breaks down the heating and cooling mechanisms in my body and that either too warm or too cold and I will have severe pain and lots of problems.

5. You want to do something active but can't: I just try acceptance.

6. When I don't feel supported: I just try to be thankful for whatever support I do have. I have four other people in my household that are suffering from EM, so there is usually someone who understands. Outside my own household and some extended family I don't feel a lot of support, but I am thankful for what I do have.

7. When I feel like I am going crazy from the pain and mental stress: I kind of let myself go a little crazy. Laugh hysterically at dark comedy like "Black Books" or "Waiting for God" (British comedy suits these macabre moods). Laugh, don't take myself too seriously, cry if I need to.

8. You feel like relaxing and can't: I try anyway...deep breathe, mindfulness, and guided imagery.

9. You have a doctor's appointment but don't know what to ask: I take some literature, try to explain things. This is a scenario I HATE. I have had some bad experiences. But some good ones, too. It is always hard to try to explain either way.

10. You want to change meds but your dr. is not supportive. I would say that a little lack of support might be okay, but if you are constantly lacking the support of your doctor with a disease that reacts soooooo differently between each patient that has EM, then it is time to find a new doctor.

5

Thanks Veerla, what a useful posting.

I'm thinking on number 9 at the moment because I'll be going to a new clinic next month. I don't suppose they will know about EM.

I'm going to take everyone's suggestions, and print the TEA brochure and get some photos ready. Maybe I can prepare a brief page of things it would be good for them to know about, and some links to information on the web.

6

Great idea, thanks for your help Veerla.

I'll put the contact information for the docs who have been treating me so far. It would be good to get them all communicating with each other. I don't know anyone who is a specialist in EM unfortunately.

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Hi Mick and Veerla,

Just to remind you we do have an 'information for members' post full of research, articles and TEA brochure to print off and take to your Dr.

Mick, who is treating you? Let us know your state- see if we have any names.

http://forum.livingwitherythromelalgia.org/forum/topics/em-information-requested-by-new-members

8

Thanks Veerla and mads,

That would be really helpful. I'll send you my info now mads.

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Got it and replied :-)

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Thanks very much mads, you are a star. :)

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1. I am experiencing flare ups

I try to minimize triggers ( cooling , sitting legs up , stay calm ) Take pain meds , distract myself ( book ,TV show I am really into )

2. I am feeling down/lonely

I call someone , Skype , prayer, lose myself in TV show.

3. I feel my pain is starting to get worse

Stay calm , pray , lower temp further , chili pads and fans, Take meds if haven't already , Distract myself with TV Shows

4) You have to explain your EM to someone new?

I say ....I have a neurovascular instability where my body reacts painfully and the blood vessels over react to temperature change. such as in a 65 degree room my body reacts as if it is 120 and is suffering from heat exhaustion taking the measures it does to preserve life such as dilating excessively to get rid of as much heat as possible . heat cramps . My skin feels hot to the touch and feels as if I am being burned by fire. It also goes the other way. I can get severe Raynaud's / pernio at 65 degrees where my body thinks it's freezing and my blood vessels constrict to try and keep as much temp in causing lack of blood flow to my extremeities. This is also painful but not nearly as much as heat so I always have to stay just a little too cold than I would like to be to prevent burning pain.

5. I want to do ............ but I cant (Name activity)

This is a hard one for me. I have accepted my new limitations and it's been about 5 years so it is now just life. It is beyond difficult when I can't even do the small things I have learned to accept as my new limitations. It gets me every time. I am house bound but If it is cool enough outside to get to my car and The store is cool enough inside I can normally walk in there 5 minutes and pick up a few things before my standing / walking gets the best of me. I have days here and there where I try this and I can't last 1 minute. It is instantly ,severely painful and I must leave without getting what I came for. These days I simply lose it which will discussed further in question 7 : )

Hands hurt ...must go...to be continued!

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1. I try to react early on when I notice changes that usually announce a flare by washing with cold water and then elevating in direction of my fan on high speed. When waking up I already flare a little so I go to the bathroom, quickly put my feet under running cold water, use the toilet, wash hands and feet again, also my face if its bad. Then I elevate my feet and use the fan till it gets better. Also, I dress so thin that it feels slightly cold.

2. Youtube or music do something for me if I'm down. One favorite for lifting my spirits is Handels Water music, Haydn or Telemann are also nice.

3. I hastlily start researching for drugs to suggest to my doctor, get a bad temper and tend to brush of attempts of conversation made at me. I use the sentence "The thoughts pass away, I am calm and serene" (possibly badly translated from my native language german) usually repeated in silence for myself to drive away what is to much for me at that moment. My next short term measure then is cooling my whole body down with a cold shower, followed by elevation and cold air.

4. I try to make it brief: Any position other than elevated brings red hot swellings and pain to my feet, inner and outer warmth, exercise bring pain to various other body parts. I also mention that relief of symptoms needs to be found by individual trial and error because there is nothing that works for every case.

5. I have pretty much accepted that there are many activities that I cannot do without causing me increasingly intense pain. I just don't do these anymore resp. I avoid them as much as possible. I try to focus on doing things I can do that help me being more balanced and calm, because stress and fear are factors which make my pain worse and more frequent.

6. I reduced contact to my parents to a minimum because phone calls with them lead to pain episodes. They just continually put pressure on me and emotionally drag me down. Also, I am less able to cope with their rather difficult personalities that I used to. But I get a lot of support from my wife and my brother. So in the case that I need support, say if I am alone in hospital, than I call them.

7. At the moment I try autogenic training but without the autosuggestion of warmth. (It works and consequently causes pain.) I am also on the look out for other relaxation techniques.

8. I try distraction by youtube or music. Also, groaning and/or shouting can help a little.

9. I come here, search for medications, supplements, food and find other things to discuss on the web. Also, I google for research articles on EM (in english because results in german are very limited).

10. If my doctor were not supportive I would change to another. She is very supportive and interested though and also quite near to my home. I am however considering to get a second opinion on herbs and supplements.