We are in the market for a new mattress also so I'm interested to see what advice you get on this site. I had fairly recently bought a Cuddle Ewe mattress topper after sleeping on a foam one for years. Cuddle Ewe is filled with wool instead of chemical-based foams. I would not recommend it. After about a year of using it, it has become very lumpy.
Personally I am going to ask the sales people what the softest mattresses in the store are and then try each out until I find one I can live with. Then probably put a foam topper or a body pillow (which is what I currently sleep on, on top of our mattress & Cuddle Ewe) on top of that to make it even cushier.
Good luck to you in your search. I agree you are an awesome husband to be helping in this way.
Let us know if you find something good & take care. MegView Thread
Thanks, JR. I am totally in the same boat of having had migraines for years but not identifying them as such. I had help from people in this very online community understanding them for what they were. When I talked to my neurologist, she was a bit more conservative about it, saying my headaches have a "migrainous quality" and she wants to observe me for a while. She does not want to rx me anything until we get a better picture of what's going on. But it's a very distinctive kind of pain, isn't it? Different than a regular headache or other FM pain.
Anyway, thanks so much for your advice and good thoughts. I am feeling quite a bit better after a couple of hours with ibuprofen in my system.
As advised by the wonderful people here, I am going to try to focus on what I can do, which today means I still have enough of my health on most days to be able to work. I'm trying not to take that for granted because it's a big deal.
Another random question as I/we try to solve the puzzle of our health.
As I sit and wait...and wait and wait for the results of my skin biopsy for small fiber polyneuropathy (SFPN -- pins and needles, buzzing and pain in my legs, feet, hands and forearms -- a lot of us FMites have this), I have been looking at what some of the potential causes of SFPN are -- besides its association with FM.
It seems that while most cases of SPFN are "idiopathic" -- no known cause, that sarcoidosis is a common cause of small fiber neuropathy. Sarc does have some symptom overlap with FM -- pain, fatigue, etc. It's classified as an autoimmune disease.
Has anyone been tested for this, or talked to your Dr. about it? MegView Thread
As usual I'm in and out of touch as I can be. I hope everyone is holding up ok. Soft, warm hugs to all!
Here in MN we are getting snow again today, and it's 20 degrees below the average for this time of year. It's enough to make you depressed if you weren't already!
Checking in today...I'm at work, with a migraine. I have taken all my usual meds -- including pain relievers Cymbalta and Neurontin, plus I've downed 400mg of Motrin that I'm not even supposed to take and the pain is definitely still there. I am going to take another 200mg and see if I can get it at bay. After that, if needed 200mg more, max, and then I'm going to have to live with whatever keeps breaking through after that. I wish 800mg weren't the top.
I almost didn't come in to work because I haven't had this bad of pain in a while. I feel like migraine pain can kind of turns up the volume on other symptoms -- my foot and leg pain is worse today, for example, and I have even less tolerance for loud sounds or things touching my skin than usual. The only reason I came to work is to have a distraction. Sitting at home, it's hard to find a way to distract myself enough from the pain. I may go home later if I get desperate.
Time to buck up and enjoy today as much as I can. Today is a gift as is every day!!
Flaring and actually feeling sort of sorry for myself, Meg.View Thread
Update on SFPN. (Not too exciting at the moment, more a further trial of my patience with the medical system.)
Hi, all. Went to have my skin biopsy Tuesday to see if I have Small Fiber (Poly)neuropathy. I had waited like 6 weeks to get into this one neurologist in the clinic system who does them.
On the day of the appointment, it was snowing and traffic was really slow and I guess I didn't leave enough time because I was 10 min late for my appt. I called ahead from my car to say it was looking bad but I was on my way and could they please hold my appointment. I thought this was the polite thing to do. They refused to see me. My appointment was booked as a procedure, and if you are late for a procedure, you have to re-schedule, they said. They offered me an appointment 1 month from Tuesday. I cried. I really tried not to, but I cried.
I do understand they have to book a procedure room, get it all set up, etc. I get that it's a hassle. My argument is if you want a medical system that serves real people then it has to anticipate that, annoyingly, sometimes people get stuck in traffic when it snows and are 10 min late. I cannot tell you the number of times I have waited for a doctor for 10, 20, 30 minutes. I told them that I thought their policy was very unrealistic and didn't serve patients well and respects the time of doctors more than patients.
They then told me I could sit in their waiting room and wait 3 hours to see if someone else failed their appointment and they would squeeze me in. I told them again that that statement communicates to me that they do not see my time as valuable, and that I felt disrespected by the conversation. (Yes, I was totally and completely on my high horse. Which was sort of unfair, because these poor people were not actually personally responsible for all of my previous frustrations with being ill-treated by the medical system. But they were also not being nice.)
After about 1/2 hour of arguing my case, they agreed to do my biopsy over their lunch period. Which was nice. And they did. I left the office for a bit and came back with a little treat for the nurse and the doctor for taking time out of their personal time to help me.
The biopsy did not hurt, except the lidocaine shot felt like a bee sting when they put it in. Linda was right, they drill deep for the biopsy. I have a small hole on my external left ankle and inner left calf. They are healing nicely as of now.
The kicker? I have to wait 3-4 weeks for results.
Stay tuned for the next episode in this serial melodrama!
Morningstar, I am 42 and in much the same situation. You are not alone. I have been battling this for a long time. Probably 7-8 years if I think about it. I feel much better now than I have in a long time, and that is in large part bc of the advice I've received on this site, and good doctors. My message is you CAN and WILL feel better than you do today.
Mary gave you some good advice above about pacing. Also, guilt is counterproductive. Just do the best you can. Your kids will not benefit from you pushing yourself because the more you pace, the less "push-crash" you will get. Moderation in activity level is key.
For pain relief, I recommend: Cymbalta, neurontin, warm baths, massage, any kind of mattress topper, heating pads, acupuncture. Also, get your vitamin D tested. I felt much better when my Vit D was in the 50-60 range. Many of us have to take massive doses of D to get our levels up.
Mostly, you need to find a good Dr. and work trial and error until you find a pattern of treatments and medications and lifestyle changes that lessen your pain. You can't keep living like this -- with such a low quality of life. Make addressing your pain issues a top priority and the rest will fall into place better.
An, I agree with Maria that we will always have some pain. It varies a lot. Here are some other ideas for relief: * Heating pad; * Gentle massage; * VITAMIN D -- have your levels tested and get up to the 50-60 range!! This will help. I am not a doctor! * Meditation; * Medication -- ones that have helped me: Cymbalta (now off patent so cheaper), neurontin (generic also). Others on this site have suggested elavil. I have not tried that. I also do break down and take Aleve or Ibuprofen. It only takes the edge off, but it helps.
An, the other advice I have received many times, and scoffed at many times because I was not in the place to hear it, is focus on what you DO have and what you CAN do. It's hard, but it makes a difference!!!
I have experienced the same thing. Being told to exercise when we all have some level of exercise intolerance. Not only will we collapse/flare for a certain amount of time, I have become physically iill from overdoing it.
I find I can do a low level of exercise -- for me it is yoga and walking. Some swimming. What helped me was going to Physical Therapy with a professional who has experience treating FM. They can put you on a program for any level. If your goal is running a marathon again, and your body will cooperate toward that goal, fine. If you are just trying to get fit enough to be able to unload the dishwasher, that's fine, too. They put you through a fitness program with gradual increases. For example, my first week I did some stretching and 12 minutes of walking a day. Then, after three weeks if I felt ok, I would add a minute to the walking, and eventually I could add a minute a week and then a minute a day. It's all about gradual increases, and being sure not to overdo it.
Staying "fit" means a whole different thing now (I used to do triathlons!) but it's still important.
We have all been there. Our situation gets so minimized by professionals all the time. I think it's unrealistic for someone to expect you to live with that much pain. I have some suggestions:
1). It's reasonable to see a rheumy, neurologist, GP, endocrinologist, psychiatrist -- these professions may all have something to add to our treatment options. Rely on whatever specialist will take u most seriously.
2). Take a loved one with u to appts. It's hard to reason with a medical professional when you are blinded by pain. Get some help
3). Try acupuncture, warm baths, heating pads and get your Vit D level up to 50-60 range.
4). Consider trying one of the FDA approved fibro meds -- they are used for any chronic pain -- Cymbalta, Lyrica, Savella.
5). If all else fails, you may have to suck it up and drive to the next county or regional center to keep Dr shopping until u find someone u can work with
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