There some old posts on this, but nothing In the last two years, so I thought I would start a new thread. My PSA for using a wheelchair. ️
I inherited erythromelalgia so have had symptoms all my life, plus slowly loosing function since my 30s (I’m now 64). But I always found new ways to do what I wanted so never considered it disabling. Then around 10 years ago, it started to affect my ability to work as the flares in my feet made walking painful and, of course, limited my ability to wear shoes and socks – a real problem in a location with months of below freezing temperatures.
But like most folks, I resisted the need for assistive technology (walker, cane, etc.) or considering myself disabled. I worked less and less as time went on, but I still worked. Luckily for me, I had close friends who were disabled and pushed me to get the help I needed. So, I applied for disability. But it was another year before I was willing to ask for a wheelchair.
After all, I could still stand and walk – even if the flares meant that I spent 90% of my waking hours lying in a lift chair with my feet elevated.
I’ve had the wheelchair since September, and it has seriously changed my life. I went to the opera, then out to dinner - a five hour excursion! It had been more than a year since I’d been out for even an hour at a time. When it’s not too hot or cold, I can even “walk” my dog, or visit the neighborhood coffee shop. I can join family functions I’ve previously skipped.
Besides removing pressure on my feet from walking and standing, with a wheelchair, I can keep my feet on ice packs while I’m out. I also carry spare ice in a wheelchair pack for long outings. Since I now have flares in my fingers, Medicaid approved me to get a power wheelchair not a manual.
How would one go about convincing a family member you need one? I’ve developed EM fairly young (14) and have had it for about four years now. Walking is incredibly painful, standing even really and I found myself on the verge of tears eating dinner the other night with my legs hanging down and had to go finish eating in the recliner with my feet up. I myself have no problem with using a wheelchair, I’d feel it would greatly improve my life in the times I need it. However my parents, who I am dependent on as I’ve never been able to work, or at least find a job I can do, they don’t agree with me, say I just have to live with this and get a job. They refuse to even rent a cheap one from an amusement park so I can go out and enjoy it for a free party from my mom’s work so I’ll be stuck inside with my legs reclined. However debating to go and have her see me crying to show her it really is painful for me though I don’t think I have that in me to endure that pain. All this would be solved if I could just work myself I just can’t find a job that I could actually do without crying. I have borrowed my grandmother’s walker in the past but even now that has been taken away as she needed it back.
Oh Kats, I am so very sorry you are going through this with such a unsympathetic family. Do you have a diagnosis? If so, your physician might be the person to have in your corner. My physician pushed me also to get a wheelchair and was very supportive of my doing so. If you don’t have a useful physician - and as you know from this discussion list, many are not useful - Someone I know wrote a gofundme appeal for a power wheelchair and receive enough donation money to buy it. It seems that many people want to help strangers with this kind of issue. Is that something you’d be able to do? I also suggest you contact your local A-DRC as they can help you get resources including applying for disability status and SSI. Once you have disability status, you will be automatically on Medicaid and can get a wheelchair through Medicaid. The only other thing I can imagine to do would be to gather articles that discuss how disabling EM is to share those with your Family.
Yes I have been diagnosed fairly recently by my foot doctor, so far we have tried a few different things including a topical cream that made the pain worse the first week of using it and then I just went back to how I was before, right now we are trying an anti-inflammatory. Next time I see him in about a week or two I will try and mention a wheelchair, the biggest issue is I always have one of my parents with me as I can’t drive and they think it’s ridiculous for me to want one. I have some online friends who may be willing to make a gofundme. I know once my mom can get a weekday off she’s taking me to a place that helps people with disabilities, she’ll do that but not admit I’m disabled. I have been trying to find one but most are of people who stick their feet in ice water most of the day and because I don’t do that (as I was first diagnosed with raynauds) she thinks I’m not as bad as they are.
An anti-inflammatory is unlikely to work because erythromelalgia is not immune mediated. Both inflammation and erythromelalgia cause erythema, a reddening of the skin caused by hyperemia (increased blood flow) in superficial capillaries, but the erythema in inflammation is caused by the body’s immune system, while the erythema in erythromelagia is caused by something else (there are varying theories). Anti-inflammatories work by blocking certain chemicals that cause inflammation. Since erythromelalgia is not an inflammatory condition, there is unlikely to be substantial pharmacological benefit from taking them.
Yeah I’m not quite sure why he put me on it, perhaps he doesn’t quite realize what the pain is caused from. Next time I’m going to come with a list of medications people recommended, though a lot I have unfortunately already tried (such as lyrica and vasodialoters) and I already take cymbalta for my depression. I’m also going to be asking about the wheelchair. Even if he doesn’t know everything about it I’m just thankful he does know about it and has given me a diagnosis as well as he’s at least trying to work with me.
Doctors at the Mayo Clinic published a research paper in JAMA Dermatology about their case study of a 17 year old girl treated with a compounded cream of amitriptyline and ketamine. The patient said it provided “spectacular improvement”. Based on reports from community members who have visited the Mayo Clinic, compounded topical amitriptyline and ketamine seems to be their go to treatment for erythromelalgia.
Though wait, I see you already tried a compounded cream with ketamine and (maybe) amitriptyline. I also see you tried a lidocaine patch and that didn’t work. Maybe your doctor should try a systemic sodium channel blocker? I take mexiletine. One of the same Mayo doctors who published the amitriptyline and ketamine paper (Mark Davis) also published an earlier paper in JAMA Dermatology regarding the use of intravenous lidocaine and oral mexiletine for erythromelalgia. Both drugs are sodium channel blockers. Mexiletine is considered the oral analog of lidocaine because of its similar chemical structure. Mexiletine is very effective for me. I’ve never needed a lidocaine infusion.
I’ll mention the use of iv lidocaine and mexiletine, I think my gp put me on a sodium channel blocker before when I was still undiagnosed, it was called nifidepine, however I’ve read it can make EM worse after looking up side effects when it did make it worse. I’m not sure the exact compound he gave me for the cream, I’ll be sure to ask next time i go, though I’m always uneasy with a cream as i have a dog who likes to lick my feet and socks often make me flare even when elevated, fingers crossed I find something that works.
Nifedipine is a calcium channel blocker. It lowers blood pressure because it’s a peripheral vasodilator. Nifedipine is sometimes given for Raynaud’s phenomenon, which is caused by excessive vasoconstriction. A vasodilator is essentially the exact opposite of what you need. That would be like prescribing you Cialis or Viagra (both strong vasodilators). They would make you worse, too.
Yikes. I don’t know why any doctor would prescribe you a vasodilator, unless they thought you actually had Raynaud’s.
I was first diagnosed with raynauds at 14 when I first had my symptoms as after a long time of standing my feet turn a dusky red/purple and are extremely cold to the touch, now I’ve been diagnosed with both though I’m still a bit iffy on the raynauds, the nifidepine was prescribed before we knew what I had so I’m going to ask to go off it as it’s been several weeks and no improvement after the worsening of it.
A lot of people here are told they have both Raynaud’s and erythromelalgia. I’m skeptical because there is so much overlap with the symptoms. My EM affected areas often turn ice cold, but i’m fairly certain I don’t have Raynaud’s.
But that does explain why your doctor would prescribe a vasodilator for you. I once dated someone who took Cialis for Raynaud’s.
Kats – I don’t understand why you think you’re not able to work. People in wheelchairs work all time! Assuming you get one and get your mobility back. Additionally, there are plenty of jobs that are work-at-home, particularly in member/customer service. And, assuming you’re in American you have the ADA to back you up so your employer makes reasonable accommodations (such as allowing you a work station that allows your lower legs to be propped up). You can get a car with hand controls since you can’t drive with your legs… the list of ways to make it work goes on and on and on!
You are way too young to think you’ll never be a productive member of society. You’ve been dealt this hand, which admittedly is not a great one, but you don’t fold! You play the hand you’re dealt.
Yeah I’m skeptical about it too, I was first prescribed cilostazol which did nothing for me, and my gp didn’t really know what was going on at all just prescribed what he hoped would help, I’m working with my foot doctor now however who is the one who diagnosed me.
My biggest problem is I’m not exactly qualified for those jobs, I had to drop out of high school because of severe depression and need to get my ged still. I also suffer from generalized anxiety disorder and had severe panic attacks every morning before I went to school, resulting in online school since 8th grade, I know it’s not an excuse of course it would just be more difficult for me. Before all this got worse I was working on starting a dog walking/pet sitting business in my local neighborhood as a good chunk of it own dogs and other pets. I suppose you could say my big dream is to either get better or get a wheelchair where I could start that business that is flexible to my schedule and allows me to get in exercise without too much but some social interaction. I just don’t know what the future holds and it is terrifying to me.