Anyone else dealing with severe Edema?

Hello from Alberta Canada
This is my first post so bear with me lol
My EM is the worst it’s ever been and I am REALLY struggling. It first showed up around 2016 when I was 50 years old with just my toes and a small area below my toes. My doctor thought it was an allergic response to socks or footwear and I rarely had flares…flash forward it is now my entire foot and half way up my lower leg, my hands and one side of my face. The nerve pain is almost unbearable. My feet and legs are constant, they are never settled and I spend a lot of time with my feet inside ziploc bags dipped in moderately cold water inside a recycle container (I know - sounds weird) because it is deep enough for the water to cover some of my shin. I put them in bags to avoid water damage to my skin from having to be in water so much. I also have Raynaud’s so I have to be careful with how cold the water is. My other health conditions are Fibromyalgia, Ménière’s disease, BPPV, high blood pressure, and a lung disease called LAM.
Last night I was unable to sleep at all because of the heat (despite AC and a fan and cooling gel pads under my bottom sheet) and I ended up at emerg for the first time ever for EM management. I’ve only had about 6 hours of sleep in 4 nights.
My feet and lower legs are extremely swollen with Edema and have been for 2 months now. The tops of my feet are covered in fluid filled blisters and my ankles are covered in a thick raised rash that is both itchy and painful. I find when I have my feet raised they flair worse. I was given a toradol shot and given scripts for gabapentin and told to start taking 325 mg of aspirin a day. The emerge doctor said I need to be walking at least 30 minutes a day to disperse the fluid, so I tried that today and my foot doubled in size and 6 more blisters appeared on my feet. I was bawling in pain and could barely get in my house.
I have a referral to a rheumatologist and a dermatologist but I’m not holding my breath…seems no doctors have a clue what to do with it.
I’ve been having more and more melt downs lately and I’m feeling pretty hopeless. Curious if anyone else is dealing with the Edema and blisters ?

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I just want to give you a big virtual hug @Gemgal66. I think that is the most severe picture I’ve seen in my 5 years here. You are a warrior to fight through that! I don’t see how walking could possibly work with feet that swollen and blistered. Perhaps non-weight bearing exercise to help disperse the fluid would be more tolerable? I was thinking of a recumbent stationary bike or aquatic exercise. You first need less painful exercise before you can progress towards walking 30 minutes a day. Set that as the goal but start with a more modest routine you can tolerate.

Thank you for your empathy @CarterDK :heart: it has definitely been a struggle with many sleepless nights and lots of tears from frustration but I just plug along as best as I can :blush:

Hi there, and my sympathies for your struggle. My overall situation with EM is far milder than yours, but I have had bouts with severe swelling, feet being like balloons. In my case, I traced it to two things.

First, is a particular exercise. I have a simple elliptical machine at home that I use for short sessions. At the time, I was pushing myself to use the machine for longer workouts (say 30 min at gentle pace), and the swelling would come on within the day (usually a few hours after exercise), and sometimes not go down for weeks once induced. If I only use the machine for a few minutes at a time (say 5 min), this does not occur. I don’t get this kind of severe swelling after long walks or swimming - only the elliptical. I haven’t tried a bike or treadmill, so I can’t say if those would do it.

Second trigger is hormonal cycle. My feet now swell some at the beginning of my period, and if I do even a lighter session on the machine at this particular moment in my cycle, significant swelling is far more likely than at other times of my month.

I have no idea why using the elliptical at slow pace for 30 minutes causes such edema, while walking for hours does not. But I hope this helps you investigate your personal triggers and thresholds and, with any luck, find some relief.

Thank you @LibbyK I’m sorry about your struggles too :frowning: There doesn’t seem to be any rhyme or reason to the swelling. The doctor I saw at ER on Tuesday night seems to think the blisters are happening because I’m cooling my feet too often and not moving around enough. He told me to cool them less and move more but unfortunately that made them worse over the last few days.
I made a trip to BC from Alberta in early March. They swelled terribly over those few days and just never came down to normal. But the blistering is new. Oddly enough I also developed very itchy rashes on the outsides of both ankles as well :confused:
Thank you for sharing your experiences with me :slight_smile:

So things have gotten even worse and I am losing hope. My nerve pain is worse than ever since starting the gabapentin and aspirin- not sure what to do :frowning:

Yep, mine look even worse. I couldn’t photograph them because they look horrific.The skin on both feet are broken and my lower legs are covered in tiny raised Itchy heat spots. The healed blisters have become raised welts on the skin and my legs are hugely swollen to the knees 24/7 and burn 24/7. Frozen Chillow mats with a cover over to protect my skin allow me to sleep all night, thanks God. I’m in zinc bandages 24/7 too.

@lynne4cobis awww :cry: that sounds awful ! I’m sorry you are suffering also :broken_heart:
Can I ask what chillow mats are or was that a typo ? Also where do you find zinc bandages ? I hope you can get everything cleared up and find some relief. Take care :hugs:

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Chillow , name of brand, mats are gel filled plastic mats with felt bottoms that you use to put your feet or face or any other part of your body to cool it. You can either choose the type that you fill with very cold water or the other that you put in the freezer till really stiff and frozen then cover with a pillowcase or a thin towel to protect your skin.
I get my PB 7 zinc bandages from my NHS district nurse, but you can buy them from
Ebay or other pharmacies

@lynne4cobis thank you so much ! I will definitely be buying these

They are invaluable to me. Sudocrem or any zinc and castor oil baby cream smoothed on blisters will dry them up.

@lynne4cobis I have that cream here ! I will try it :slight_smile: thank you :slight_smile:

You need to a diuretic to reduce the edema - that’s the only thing that works for me when I start to swell. And I agree from years of looking at other photos of people engaging in frequent cooling in cold water that’s where your blisters are coming from. The FDA has recently approved a topical cream with high amounts of amitryptaline for EM pain - perhaps your dermatologist could call in a compounded version? Or there’s always EMLA, lidocaine cream, or Doxepin cream in the event you can’t get a specially-compounded cream. If your doctor is willing, you might ask that ketamine be included. Ketamine and amitryptaline cream are a proven combination for many. Also, Lasix (or generic Furosemide) are powerful diuretics that could bring you edema relief within a few days. Best of luck to you, friend! Keep the faith!

@jthomas158 hello and thank you for your advice :slight_smile:
I have been on a diuretic for nearly 4 weeks now and last week after being at emergency I was put on IV lasix this last week.
I have to disagree with you about the cool water causing my blisters though, for a few reasons.

Firstly my right leg is at least one and a half times bigger than my left with edema;maybe even double. Secondly I have peripheral neuropathy in my right leg. Lastly my blisters are only on my right foot and both my feet are in the cool water, so I just don’t think my blisters are from the cooling process, however I have heard of that being a possibility for others. I have to be very careful about the temperature of water I use as I also have Reynauds so it can’t be really cold. I do have a ketamine cream for my feet but it cannot be used on broken skin so I’ve just been dabbing it on the healthy areas.

When I went for my bandage changes and IV treatment yesterday the doctor suggested I try wrapping my feet and legs in the tensor bandages.
Of course this is impossible to do myself so I will be asking for help from friends and see if that helps with the edema :slight_smile:
Thank you for taking the time to help and for your encouragement- I really appreciate it ! Take care :slight_smile:

@jthomas158 I also forgot to include that my feet are never directly in water. I put my feet inside extra large ziplocs and then set them inside a tall bucket of water. I used to just put them directly in but it was damaging my skin

Well, I guess I misunderstood about the blisters, and since I don’t get them personally, I probably shouldn’t have given advice on that part of your post. I do take Lasix very often, and I am sorry to hear you’ve had to resort to the IV variety! The edema must be quite severe! I know it’s very critical when taking a diuretic to make sure you’re not depleting your potassium, so my doctor always prescribes extra potassium pills with the Lasix (whereas some diuretics come with the potassium included, like spironolactone). I hope you feel better soon!

@jthomas158 no worries ! I appreciate any advice given ! They have been doing kidney function tests throughout the treatment so I’m assuming it’s because of the issues that can arise from potassium loss but thanks for the heads up :slight_smile: never worry about giving advice or opinions I’m open to them all :slight_smile:

A post was split to a new topic: Andy’s story

I have been taking diuretics every day for high blood pressure associated with this ER. It has no effect on my swelling. Swelling has been associated with ER since the 19th century.

Gemgal66 I am so sorry to hear about your pain an struggle. It is really getting one down,especially since you do not get any sleep.I really feel for you. I was diagnosed with EM about 3 years ago, I went through hell until some relief came from meds.kept under control