"But you're not damaged enough for disability!"

I recently had someone say that to me when I had mentioned applying for disability for the time being until I can get my EM under control. Mind you, I am not paralyzed, I don’t have cancer, or any other kind of life threatening disease. But my hands and feet flare every 15 mins of physical activity and I have to sit and elevate or cool wet rag until they go back to normal. Or after stress or if I get real emotional, and sometimes for no reason at all. Mine started out with a flare only when the weather would get extremely hot, or if I would walk very long distances, and now it’s constant at night and for the most part of the day off & on. So far no luck with gabapentin, aspirin, or lidocaine ointment. I was a licensed massage therapist, but with the EM it’s made doing massage therapy incredibly difficult.

My doctor has agreed to fill out the disability paperwork because this crap has had such a negative impact on my life. But apparently to this person I had been talking to, I’m not hurting enough, I don’t have enough “damage” done to be on disability. I know state disability is really hard to get on, and a lot of people have to apply multiple times and even get attorneys, but what can I lose if I try? I know that there are others far worse than myself.

I started to try and explain the condition, got a look of total disbelief, some eye rolling, and a whole lot of attitude.

Has anyone had this kind of experience? How did you handle the situation?

I went to quite a few specialists in different fields of medications the first two years after I started burning.
After being Mis- diagnosed and given the wrong advice
for managing the pain, I was finally diagnosed with EM
By a neurologist. I explained the last two years of my life
to him. He said that during that time I had gone from mild
symptoms of EM to severe symptoms. I could NOT do much of anything by that point. I was housebound except
when being transported to the Doctor. On my Doctors advice, I applied for Social Security Benefits.
I was denied 3 times!! My husband retained a lawyer and within days of him filing, we received a letter from the judge that was assigned my case. He said that it was quite obvious I was disabled and he was not going to waste the court’s time
with something so obvious!! Don’t give up! I have now had EM for 10and1/2 years. I have had Doctor’s/ Therapists/ People on the street, etc, etc, telling me it’s just in my head. I had one Doctor walk in the room, look at my feet, and tell me that I had neuropathy and walk out saying, get your blood sugar levels under control!! My new Doctor told me I am the opposite of diabetic neuropathy, I FEEL everything that comes near my feet quite intensely!! My feet are on fire and my pain level is SO high that I take quite a bit of medicine to make it through each day. Keep fighting, find the right Doctor for you, and file for Soc. Sec.
I know one day they will find a cure for us EMer’s. In the mean time, I pray for a healing, read, crochet, and work on crossword puzzles!!

In all the time I have been a member this is the first time I have ever posted, but I am because I know how you feel + what you are going through.

What country are you in, I'm assuming the US?

I had a battle for many years over claiming disability. Here in addition to reports from your doctor + hospital specialists, you need to have regular medical assessments by the governments own doctors. All of these reports are then used to determine if you qualify. This means most of the time you have to apply from scratch + go through the medicals every 12 months. Problem with this is that the doctor doing the assessment can write something different from a previous doctor, etc. Only in extreme cases are you awarded longer terms + there are different levels of disability paying different amounts, so the more severe you are the more money you get.

Very long story short, I had a constant battle until the last time I needed to apply. To my amazement I was been placed in the highest level of disabilty (which comes with a disabled badge for the car) indefinitely. This means I no longer have to apply from scratch + go through it all every 12 months, instead they randomly select a % of people in this category to reassess to ensure they have not improved.

This is supposed to be a word of encouragement that if you keep at it, hopefully your disability will get recognised.

With regards to your friend, yes I have this trouble too. Its as of they treat you like you are just being lazy. Have you seen the ESPN video on it? Maybe showing them that would help!

I feel your pain. Even when people can see your red skin most just think it is a skin condition or you are sunburned even just flushed from nerves. They can't comprehend the pain associated with this. I have been fighting with SSI for some time now. I was denied then we appealed and this too was denied. I am now required to go to court. I have been receiving help from an advocate group paid for by my disability insurer. I was awarded disability straight away from my insurer through work. They also have the criteria that you must be totally disabled and unable to perform any type occupation just like SSI. This has been the last couple of years and I had to leave my job of 16 years as a flight attendant . I am lucky in that I had the private insurance that has been paying since the beginning and will continue to do so until SSI does.

If this court date doesn't get me approved I guess I will have to hire an at attorney . I thought the advocates would be comparable. Maybe I just got the wrong people at SSI doing the approving??? I can't even sit in a regular room temperature room or spend very long with my feet down even if I found that crazy job that lets me work in a 60 degree room which doesn't exist any way. Don't give up. I know I won't . I just think an attorney may be the way to go.

I hope you are able to get approval soon.

I have been denied twice and it is now two years. I have a court date for a hearing in May. I have constant flaring in both feet and both hands, now also up my legs and face.There are short periods when I am not bright red, but the searing pain is there regardless. I also have a number of other conditions, Interstitial Cystitis, Vulvodynia, Pudental nerve damage,(this pain feels identical to the EM pain but is in the pelvis, and vulvar area), tons of damage in my back, including two bulging discs, perineural cysts, arthritis, and dessications. Additionaly, automomic neuraopathy with the full range of symptoms, arythmias, thyroid disease and a panapoly of digestive problems, severe fatigue and weakness. I have been unable to work at all for over a year now and before that only sporadically part time. Good Luck!

Hi, Not been contributing to the forum for a while as I don't seem to have had time with loads of hospital and doctors appointments, but have a free week for a change, except for yesterday. Mine is down to my blood being thick it now seems, but I am still having problems with doctors saying it's nerve damage! There are a few people that don't e.g. the podiatry lady that is looking after 2 of my ulcers caused by poor circulation and she looked at my legs and feet and declared that no way was that nerve damage! I told her the story that they said it was due to me being diabetic, which I am not, it was an adrenal gland problem that has now been removed and my glucose levels were never very high anyway. A GP 9 years ago disagreed and said it was poor circulation but then he retired and ever since nobody has believed it. It certainly doesn't help the situation as non of them seem to know the slightest thing about EM, I live in the UK. It seems a never ending fight to get listened to. Now I can no longer even walk about my bungalow without a walker as my feet are so painful and I think I don't walk naturally and so am likely to fall. I live on my own as my husband passed away in November last year, but as far as getting benefits go it's hopeless. I am 66 and so not entitled to PIP or motability so it all has to be paid out of my own pocket. I have ordered a new car and a mobility scooter so that it can be lifted into my car using a hoist and that should make things easier for me, but again it's cost me a lot of money. I also have rheumatoid arthritis, but this wasn't diagnosed until 2 months after I applied for DLA which it was at that time and I got turned down even though it was under investigation. People told me I should appeal, but I couldn't go through that again as they sent an inspector round and when I got the report he had put completely different on the form to what I had told him, including that he said that I could cook a simple meal, which I told him I couldn't, I have to rely on ready meals. There were quite a few other things that he put down wrong. I wish I had appealed as I might have got it. Of course because of my age I can't now. I did apply for attendance allowance but was only awarded the lower rate, again the report said things that were the exact opposite of what I said. I am thinking of re-applying for that now. There are people that are nowhere near as bad as me that get it and recently a friend showed me her application form and she really told a lot of lies I couldn't believe it when I saw it as she does things for me that there is no way I could do it, but perhaps that's what you have to do exaggerate everything rather than be honest. I have never been that sort of person and do my best to get on with things, whereas other people just give up and go on and on about their illnesses, which are nothing. I have a "friend" who is always saying how ill she is yet she manages to walk round a couple of towns nearby one in the morning and then again in the afternoon. If only I could do that, I can barely walk to my drive! So, I think I am slowly learning the way you have to be to get any benefits at all, which is totally against my normal behaviour, but if it gets me help then so be it. I am still awaiting results of a blood test I had over 3 weeks ago to find the cause of my thick blood! No doubt the results are back, but the longest time is not waiting for the results from the lab it's the time taken for them to do a report and a letter to my GP which is always copied to me at my request. Of course they won't tell you on the phone so no point in trying that.