I totally haven't posted here in forever. I blame the senior thesis. And trying to graduate college. (Which I managed, and on time! Yay me!)
Anyway, I have a question:
Does anyone else have problems taking Vitamin D supplements? I know a lot of other fibromites tend to be deficient (I won't go into the mysterious and frustrating circumstances surrounding my own deficiency), and Vitamin D helps a lot of people, but the worst I've heard about side effects is that it can make you constipated.
However, I experience really severe and life-interfering side effects from it. Last year, doc put me on a prescription supplement of 50,000 IUs to be taken once a week for several months. Within an hour after taking it, it felt like there was a rock in my stomach. I experienced waves after wave of severe nausea, worse than I usually get, along with a marked decrease in energy and basically being unable to function for a day. These effects were less the next day and abated through the week in time for the next dose. It took a couple of weeks after finishing the prescription for me to start to return to normal and get my energy back.
This time around, I'm on an OTC supplement that's only 1,000 IUs that I'm supposed to take daily. I thought this significantly lower dose couldn't be like my previous D supplement experience. And yet here I am, the first day, having the exact same problems.
I've no idea what's going on. I've had problems with multivitamins in the past, but nothing like this. Anyone else experience this sort of reaction to Vitamin D? Suggestions for what to do about it? I can't spend the next three months nonfunctional because I've got a persistent deficiency.View Thread
Well, pharmacist says because I reacted to prescription AND OTC supplements, it's not likely an inactive ingredient, and I'm probably having a very strange reaction to the Vitamin D itself. Which is bizarre because I can drink fortified milk with no problem. So it's back to the doctor with me, I guess. . .View Thread
I've had my symptoms since I was a kid, and I've had a D deficiency only for a couple of years now. I'm pretty sure it's not the deficiency. I've just got bad luck with doctors. They never believe me when I tell them how long things have been bothering me. Hello, doctor! I did not realize until I was 17 that having pain all the fricking time was not normal! They've blamed my symptoms (and not just fibro symptoms, but depression and anxiety as well) on iron deficiency, stress, not exercising enough, not eating well enough, allergies, and one doctor was convinced I was making it all up despite treating my mother for fibro.
And I had to stop taking the supplements Wednesday because after only a few days it'd gotten so bad that I'd developed orthostatic intolerance and couldn't eat anything that wasn't a starch. I feel absolutely fine now. Definitely something in it is not agreeing with me. Sigh. . .View Thread
See, I do this. I'm always outside in sun and don't wear sunscreen. I get at least an hour daily. I have no idea how I managed to be deficient, honestly. I just want to correct the deficiency so my doctor doesn't start blaming my symptoms on that, like happened with my iron deficiency.View Thread
I do take it with meals. The bottle says to do so, and so I make sure to listen to it.
As far as I can tell, nothing else in the ingredients list has ever bothered me before, at least not to this extreme, but I'll take your advice and talk to a pharmacist next time I can get to a pharmacy. I often forget that pharmacists know all the useful things because I only interact with them briefly once a year. . .View Thread
ooh, this is a lovely question. I don't use medication at all. Long answer incoming:
1. Extremely thorough stretching first thing in the morning. I try to get all the muscles. It takes between thirty and sixty minutes depending on how well I can actually manage. Over time (I'm talking months) it significantly reduces general pain.
2. Low impact exercise. I'm fond of tai chi, mowing my lawn (I've got a non-motorized reel mower!), bicycling and short sprints with my dog.
3. Maintaining good sleep hygiene. (How I manage that could take up an entire other reply!)
4. Heat! Hot showers, hot baths, heating pad, hot water bottle, rice socks, wearing too many layers, snuggling under blankets, keeping the AC off in summer. For heat application, lots of people like to alternate with cold, but cold always worsens symptoms unless I've got a legit injury (in which case it helps the injury and worsens fibro symptoms).
5. Menthol or capsaicin topical creams and stuff for especially achy muscles. Be careful, they can be very uncomfy the first few times you use them.
6. Epsom salt soaks. I try to have a long warm soak once a week with epsom salt. It does wonders.
7. Be social regularly. Improved mood takes your mind off the pain, reduces stress. And less stress means less pain.
8. Physical therapy. I went once a week for three months. My therapist knew how to handle fibro patients and has been the single most helpful healthcare professional I've ever seen.
9. Massage. Exchange backrubs with a friend willing to be trained (tender points plus most amateur massage are a badbadbad combo) or see a professional massage therapist (I know a massage therapist. She's assured me they get trained for fibromites.) Massage relaxes the muscles and also helps get rid of painful muscle knots. I accumulate them like mad and I always feel so much better overall when they're gone, even if I'm sore for a few days afterward. (I am known to gain up to six inches in flexibility from knot elimination in my back. I'm serious.)
10. Watch your diet. I've found that a lot of preservatives and artificial food additives actually worsen my pain. And other symptoms. Eliminating problem foods and ingredients is immensely helpful.
11. De-stress. Stress makes you tense and being tense means more pain. Try prayer if you're faithful, meditation, mindfulness, etc. Cuddle your pet or borrow someone else's. Watch a funny movie. Take a forest bath (trees release chemicals that reduce stress! Go stand around them a while!)
12. This is something I discovered quite by accident: having another chronically ill friend who's *not* a fibromite to gripe with is lovely. Mine has POTS and we whinge at each other all the time and it really, honestly helps take my mind off my pain more than anything else does.
13. Make sure your shoes fit properly and aren't worn out. Same with the rest of the wardrobe. My shoes were causing me extra knee pain and too-big sweaters and shirts were actually giving me neck and shoulder problems. Go figure.
14. Keep moving. Look around once in a while. Stand up every now and then. I do what I can to avoid letting myself stay still too long and get stiff.
15. Listen to your body and rest when you need to. Overdoing it is the number one cause of more pain.
And I'm sure there's more but I really can't think of anything else at the moment.View Thread
I've got a hilarious fibro-fog story that I'm sure you'll all get a kick out of. It reminded me that as awful as the fibro can be, it does make life more interesting in dozens of funny ways, and that sometimes you just need to have a good old-fashioned laugh at yourself.
Last night I was hanging out in the other dorm building, in the flat of a friend who is a fellow chronic illness sufferer. It was great. Judgement free, happy place, really. We had a cooking party and watched some stuff on his computer and generally spent the evening geeking out together wondering why we hadn't been hanging out before this.
Then it gets late and I have to leave.
And I can't find my phone.
It's in none of my six pockets. Can't be in my shoes because I'm wearing them. I didn't bring a purse. Not on, in, or under the couch. It's not in the cabinets in the kitchen, not in the fridge, not anywhere on the floor, not even in the bathroom.
Friend called my phone. It went straight to voicemail, which it shouldn't have done because the battery was nearly full and I'd left it on. My ringtone had been a topic of conversation earlier, so I knew it wasn't on silent.
Not gonna lie, there was a bit of panic because I am prone to setting down my phone and not remembering where, and I really didn't want my phone to be lost forever. My plans for today would have all been derailed horribly without the ability to get in touch with several people via text message.
But I took a deep breath, decided it wasn't worth losing a whole night's sleep to, called my mother so she wouldn't think I'd died if she tried calling and I didn't answer, and went to my room. Started seeing if Verizon stores in the area were open Sunday mornings so I could use the upgrade I'm due for to get one of the freebie phones as a replacement. I've been having anxiety attacks this week, and if I could keep one more thing of the list of stuff to fret over, it was worth it.
Five minutes after I get back to my room, I get an email from my friend.
He found my phone!
In his bathroom. On the side of his sink. Under his sponge.
A damp sponge which made my phone shut off in self-defense after the LAST water-soaking in got.
I managed to hide my phone from myself under a sponge.
I think this is a new record for most bizarre place I've left something important. Now that the panic has worn off, I can't stop laughing every time I think of it. I am well impressed with myself.
If anyone else has any funny tales they'd like to share, go for it. After all, we all need reasons to laugh.View Thread
When you get referred to a rheumatologist, it might be a good idea to ask when you make an appointment if there's anything that might affect the test for lupus.
I'm glad to know you're looking into getting tested for it. When I read the original post the first thing I thought of was when I was getting my fibro diagnosis, and the rheumatologist was relieved to know that I'd always had redness on my face (I think it's rosacea, but it's not bothersome so I never bothered to find out) because it meant it wasn't a new symptom that could indicate lupus.View Thread
I'm going to jump in here with my tendency to recommend herbal remedies, and encourage you to ask your doctor about taking valerian to help with the sleep. I'm not sure if it would interact with any medications, seeing as I don't take any, so seriously, be sure to ask. Or find a pharmacist, if your doctor doesn't know. An old roommate had left a package of herbal tea that was supposed to help people sleep, and I tried it when my insomnia got bad.
Lo and behold, it was the most effective thing I'd ever tried. It's got a lot of mild herbal sedatives in it (chamomile, lavender, skullcap, and valerian root, for example), tastes great, and not only helps my mind shut down but helps me stay asleep. I've done some research and valerian seems to be helpful to a lot of people.
So, if you think you'd like to try it, go ask your doctor about it. Other than that, well, you're already trying my other solution of meditation, so I'll just wish you good luck! I know what it's like to get barely any sleep over long periods of time. *gentle hugs* Hope you find a solution!View Thread
I'm so sorry to hear you're in such an unsupportive place right now.
The first thing I would advise you to do is to set firm boundaries with your family and enforce them. Don't let them use your food stamps, don't give your family any money, and look after yourself and your son. If they get upset about this, tell them that, since they seem to think you ought to be working, you've got to tend to your needs in order to get to a place where you can work. No matter how hard they make it for you, be firm about these boundaries. Not only will you be able to feel a little better, but you'll be setting a good example for your son.
Second, see if you can find a counselor to talk to? That could really help you deal with your situation, empower you to take steps to improve or remove yourself from the situation, and all around be helpful.
And if you want to work again, there might be ways. I don't know the extent of your condition, but you are disabled, and if you know what you can do and seek a job that won't be too much, most employers are willing to work with you to get you the accommodations you'll need. Don't try to do something full time, at first, maybe look for someplace that'll give you flexible hours, etc. Evaluate your limits and work with them.
I hope you can figure something out. Remember to be firm about your needs and your limitations, even when your family belittles or doesn't believe them. *gentle hugs*View Thread