Adjustable Bed & Erythromelalgia

  • Has anyone asked their doctor, as I have for a letter supporting their buying an adjustable bed for their Erythromelalgia and back issues? My doctor turned me down saying it is not medically necessary and he is not recommending the purchase. I want the letter to claim for tax purposes, not for Insurance. I have given him many good reasons, feet elevation, massage therapy, I also
    have severe back issues, the need to help me get out of bed, blood circulation, etc. On the
    other hand, he says if I want to make a claim to Medicare, I should come to his
    office to talk about it. Which I do not want to do. Sure would like to hear others experience with this.

I think this should be something medically available for EM suffers too. I have to use wedge pillows under my knees and behind my back to bend me in a taco shape for any type of night time reduction in pain. It is difficult to get in and out of and I have to have a stool by my bed to climb in and out of it. I am always waking in the night with pain that can be alleviated or minimized by elevation or decline depending on the need. I have to struggle with adding and taking away pillows to find the right angle to sleep in which changes as the night goes on. It only causes more flaring as I struggle to readjust in the night.

I have a doctors appointment tomorrow and will ask if this is something insurance might help with. I know it would be a life changing tool for me and I am sure many of you.

Is it just me or does this EM come with lower back pain when sleeping? I have also noticed in the past several weeks when sleeping if I lean ever so slightly to one side or the other it causes terrible numbness, tingling, burning and pressure in all of my limbs! My hands, arms, legs, and feet are effected and all at the same time. It isn't as if it only effects the side I am slightly leaning on.

Has anyone had success getting insurance to cover an adjustable bed?

Thank you.

Take care,


I got such a letter from my neurologist when we bought our Tempurpedic Ergonomic bed. He had no problem providing such a letter. I was able to use his letter to count the cost of the bed in our out-of-pocket medical costs for that year.

Some doctors are not interested in being helpful, unfortunately. How does one prove "medical necessity"? If it improves one's quality of life and lessens the effects of chronic illness that should be necessary in my eyes!

Exactly clarissajo!
They have no problem prescribing meds to help with pain because that is a medical necessity .If you find a thing such as a special type of bed and they do have such beds in medical supply stores why should it be so difficult to get this prescribed? If the right kind of bed can lessen the amount of pain meds taken you would think it should be encouaged.
They are not cheap as I am sure you know and for many of us on disability getting assistance through it being a medical device may be the only way to obtain one.
I am very happy you have one now. May I ask has it helped as much as I hope I will?
I have also looked into a cooling mattress pad that has tubing in it that you set the water temp to what temp you need and it cools your whole body but this too is too expensive ( over 1,000$) and it is considered a luxury item not a medical one so I am unable to get assistance with getting one.
I Do Believe Between The Adjustable Bed And The Cooling Mattress Pad There Is Hope In Getting A Nights Sleep Some Day If I Could Only Make It Happen Financially.
All the best.
Thank you for letting me know there are some doctors that are willing to write such a letter!
Take care,

I have found the adjustable Tempurpedic VERY helpful due to my many painful medical conditions (Lyme disease, Babesiosis, Ehrlichiosis, Bartonella, fibromyalgia, lupus, RA, autoimmune hepatitis, celiac disease, Hashimoto's thyroiditis, psoriasis, erythromyalgia and Raynaud's syndrome). The soft surface helps with lots of the other types of pain, and usually elevating my legs and using a fan to blow on my feet and legs makes a big difference to my EM... but that cooling mattress pad sounds awesome!! Praying that you will be able to get the finances to purchase the bed and mattress pad very soon!

Best wishes,

I got an adjustable bed because of acid reflux, but I didn't get any financial help (just a year free of interest from the store, which worked for me).

Be forewarned if you have a sensitive nose/lungs - I bought a Tempurpedic, and it stunk horribly of petrochemicals. The store switched it out for another, in case it was a fluke. Well, I wound up sleeping on the couch for a month, with a cough, waiting for it to finish off-gassing. The toxic stink never went away and I ended up keeping the adjustable base, but exchanging the mattress for yet another (this time from a different company), which I am very happy with. That was a few years ago, so here's hoping they've improved their manufacturing/materials. This was even in the spring, with all my windows open and a fan blowing through the room. I feel nauseous just thinking about that smell.

I also got horribly hot on the Tempurpedic foam the few times I tried sleeping on it, but that was before I got EM (I see you'd fix that with a cooling pad - just be aware that those beds hold in heat much more than others).

To be honest, when I saw that there was a post about adjustable beds, I thought, "Holy crap, the beds mess up backs and have something to do with EM??" Hah. I always wondered if sleeping propped up in odd ways (especially on pillows before getting the adj. bed) caused my sciatica by messing up my lower back and pinching a nerve.

Anyway, good luck getting your bed just how you hope to! Definitely shop around for interest-free offers - I wouldn't have been able to get one if not for the payment plan.

I had the same experience with the toxic smell of the foam bed as LibbyK did. I use a sleep number adjustable bed. I got it for both acid reflux and EM. I love it. I hope you can get help paying for it but it is doubtful knowing insurance companies. I am blessed with great parents who purchased mine for me.

Hi Guys,

I have a tempur bed and pillows, wedges etc. but I had these already due to my CRPS not because of being disabled by EM. In UK practically impossible to get this sort of thing funded. Social services are great with frames, raised toilet seats, bath seats etc... the 'normal' disability aids, but not much else. I dont actually know of any Dr's ever writing letters for this not unless one is a tetra or paraplegic. The definitions of 'medical necessity' is as long as a piece of string lol! For the 'painfree' it is a luxury item as Alina so rightly says. They can actually adapt your own bed anyway by fitting in raisers top or bottom so why would they finance a new one! Another problem is that elevation is seen as a minimisation tactic not recommended as pain relief per se. What is their excuse for not minimising our intolerable discomfort I ask?. If witholding medication is unethical, why are the goalposts of ethicality moved when it comes to much needed disability aids!. An adjustable bed would be glorious;)

God bless


LibbyK is right of course, the Tempurpedic foam does smell... we had no trouble because we were able to set it up in an empty house two weeks before we moved in and it off gassed enough that I could sleep on it. And yes, the adjustable beds are wonderful for GERD/acid reflux, which I have as well.

Do try to get something that allows you to sleep and rest with your legs elevated, it has definitely made a difference for me.

I have never asked my Dr. but I was give a hospital bed and also a mattress that was a regular twin size one that wasn't a standard hospital bed mattress. It has made such a difference in my sleep life. I had been sleeping in a recliner. i also have Lupus and Fibromyalgia. Just a push of a button and I can adjust the feet and head. We removed the side rails and its just like have a twin size bed in the room. If the insurance won't agree with the other beds, I bet they would for this type You can even get Tempurpedic mattress pads in twin size if you need them or even the mattresses. worth checking into!!!

An adjustable hospital bed made a HUGE difference in my life last year. My EM and peripheral neuropathy hit in the form of severe edema in my left leg and foot. After about six weeks, my "benefits coordinator" at the insurance company suggested that I ask the orthopedist to recommend a hospital bed. He did--just on the basis of the swelling. (EM and PN hadn't been diagnosed yet.) The bed was cheaply made with a very thin mattress, but a mattress topper made it bearable. And being able to elevate my feet all night took the swelling down in a few days. (I'd been in a recliner too, and that was probably counter-productive because of course you can't elevate your legs above your heart.) I was able to return to a regular bed after a few months. Didn't cure the EM, of course, but it made it less constant and less severe. The hospital bed was less expensive than a Tempurpedic, and insurance did cover it. Keep trying to find a doctor who'll recommend at least renting a hospital bed!

I too have spent most of my sleeping time in a recliner the last few years. I have slept at least 2out of 3 years in a recliner because it really does lessen the pain. I know what you mean LynnV about counterproductive because your feet aren't high enough but I just put a few pillows under and it helps. The recliner helps immensely with my back pain while sleeping and it keeps me from rolling on my side which inevitably causes flaring and pain in all of my limbs not just the one I roll onto. Plus it is a Faux leather so it keeps me cooler than a mattress. I would be content to sleep in my recliner forever if it weren't for the fact that I am married and it is important for both of us to sleep together. In a relationship where he often can't touch me at all because he is too warm it give some sort of needed intimacy to at the very least sleep in the same bed even if we have to keep our distance! He is very understanding however that the way it is a great deal of the time I have to sleep in the recliner and it isn't an option it is a must for any kind of rest.

Take care,