Fibro Fear?!?

Okay I admit it.  I’m a wimp.  I’m probably many other things too but right now I’m very afraid and struggling to take that ‘one day at a time’ approach.  In New Zealand we’re on a steady decline into winter.  There’s only one month to go but already it feels like that air is coming straight off Antarctica.   It is, based on where we are in the world, but I don’t want to know about it.   I’m suffering already and am completely scared of what winter is going to be like for me.

Firstly some facts:

  1. It doesn’t get that cold here in NZ.  This week the daytime temperature has dropped to around 13 celsius (55F), maybe down to four  celsius (39F) overnight.    In Christchurch last year our coldest day time temperature was one celsius (33F), although night-time was rather a bit colder.  It’s not the night temperatures that worry me so much.
  2. I live in what I euphemistically describe as an ‘air-conditioned’ house.  Not usually, but thanks to 2010/11 earthquakes there are quite a few gaps where the wind blows straight through.  And while I am on the very long waiting list, it will be a while (like years!) before my gaps are repaired.
  3. Regular readers will know that I recently was diagnosed with Fibromyalgia (fibro or FM).
  4. Heat seems the only way so far, that actually helps ease those symptoms.
  5. Pre-fibro, I struggled with cold.  Actually I prefer cooler temperatures to hot but if I get too cold, I just can’t get myself warm again and that doesn’t do anything for my mental health.  I easily get depressed.

I haven’t done a fibro winter before so any advice is greatly received.  But I know only too well that the temperature drop this week has not been that big, except I have been freezing.  The heating is turned up higher, I’ve had extra layers of clothes on, sitting at my computer with a big, thick dressing gown on top of those clothes, oh and don’t forget the hot water bottle.  What is wrong with me?  And how on earth will I survive winter?

To add to that the pain this week has been worse, but I’m not experienced enough to know whether that can be put down to the cold or a bit of extra stress this week.  Whatever it is, I’m not having much fun.

Aftermath of September 4th Earthquake in Chris...
Aftermath of September 4th Earthquake in Christchurch, NZ. (Photo credit: Wikipedia)

Because of the damage to our homes and the infrastructure (BTW this pic is taken just around the corner from my home) of Christchurch, NZ Red Cross has grants available to assist with winter heating for ‘disadvantaged residences who have badly damaged homes’.  I fit into this, and thought an extra $100 per month over winter would very much help in my battle to fight the cold and the pain.  Unfortunately those with medical conditions have to have a pre-existing condition at the date of the earthquakes.  Never mind that my doctor and rheumatologist are fairly sure that the extreme stress and trauma caused to me by the earthquakes caused my fibro.  It doesn’t count.  There are other grants available to those injured in the earthquakes but again, I don’t qualify.  Don’t get me wrong, I think Red Cross has been wonderful, and of course all the donations from around the world have been a great help, but why do I always seem to be one that slips through the cracks?

Image via CartoonStock

So yes, I’m scared.  I’m cold, I’m in pain and I fear the approach of winter.  PurpleLawLady from Fibromodem gave me some good advice (thank you) regarding heat pads recently and I am checking these out.  But I have visions of needing about 10 and having to be wrapped in pads with 10 different electrical wires coming out of me.  Perhaps I could become ‘Heat Pad Woman’.  If I was any sort of artist I’d give you an idea of what I see.  As it is, I won’t scare you with my art, or my imaginings.

And the power bills?  Last year my power bills were about 50 percent higher than the year before and I have to put that down to the ‘air-conditioned’ earthquake damage letting all that heat seep out.  Enough to make me cry!  So I fear what I am going to face this year when I seem to be feeling the cold more and trying to ease the pain.

Any thoughts and ideas would be extremely welcome.  And tell me, is this just what winter is like now?  Break it to me gently, but I can take it.  Whether I can by tomorrow, when I wake up to see how much pain I have, will be another thing, but do I need to know what I’m up for.

PS.  May 12th is Fibromyalgia Awareness Day, so wear purple in support of those who suffer.  And if you want to learn more check out this excellent video (by PurpleLawLady again), and was part of the Fibromyalgia Awareness Video Competition.  Congratulations to the winning entry by  Jennifer Geyer-Forbes.

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26 thoughts on “Fibro Fear?!?

  1. I wish I had a solution instead of just words of comfort and understanding, but dealing with cold is a struggle – one that I have yet to find a sure-fire way to deal with. I’m so sorry to hear that you’re having a rough time with winter coming on… Winter began to fade around here about a month ago, but for months prior to that I sat around much the same – layers of clothes and blankets and such to stay warm. I would definitely recommend that you check out the heating pads and hopefully they will bring you some relief! You know where to come and share if you need people that will understand… 🙂

    1. Thank you. It makes such a difference to know that other people understand. I can see that heat pad and a million blankets are in order. 🙂

  2. The more people I meet in person and online, the more of a burden I have for you who suffer from Fibromyalgia. All I know to do is to say a prayer that God will be with you and that you will let Him help you this winter. You are in my thoughts. I know that I have never felt that kind of pain so I don’t have a full understanding of what it is like to be in your shoes. But from what I hear, it must be awful. Hugs

      1. I’ve actually been researching it and how it relates to mental health. There are many blogger friends on here that I read that have the same thing you struggle with and I think I am going to do a post about what I have researched the beginning of next week. Please if you have anything to add or correct, don’t hesitate!

  3. Dorothy

    I was once considered for the diagnosis of FM many years ago when the diagnosis first came out but after an agonizing six months the problem passed. I could barely walk or stand….the doctor even thought I was developing MS but they still don’t know what I had. Still I understand the pain and even now I have problems with the cold and circulation. I use heat packs that require a microwave oven to heat up but stay warm for quite some time. The assortment of packs I have covers my shoulders and back and my lap and legs. They even have ones for the feet. They’re also great for a migraine since they can be put in the freezer too.
    Stress certainly makes the pain worse and causes flare ups, at least it did when I was suffering but I never managed my stress properly with two little kids. It all just went away when Spring time came and I slowly moved myself outdoors to do some gardening. Maybe the sunlight and relaxation was what I needed to unwind. I don’t know the answer but was glad when it went away!
    I hope you can get some help with your house though to get the heat loss under control. That’s crazy…..maybe your doctor could write a letter stating you have this condition now and you need some assistance. Just a thought (or two)
    Dot

    1. Thanks Dot. what a great story. I’m so glad it went away for you. I live in hope. Thanks for the ideas of the heat packs. Actually I have seen them before but had forgotten about them so I must investigate. As for my house, I’m just one of thousands unfortunately. I think I’m stuck with it. 😉

  4. Hi Friend,
    Don’t know if you have them in NZ, but I use a heated mattress pad like this one:

    http://www.jcpenney.com/jcp/X6.aspx?GrpTyp=STY&ItemID=18411e5&deptid=82319&dep=BED+++BATH&catid=82372&pcat=BED+++BATH&cat=mattress+pads+++toppers&NOffset=0&pcatid=82319&Ne=877+586+5+966+1545&SO=0&PCmCatId=83130%7c8237286&N=4294932615+4294959510+4294963627+4294966080&Nao=0&PSO=0&bcCat=3&CmCatId=EXTERNAL|82372.

    For me, using the heat every night helps with the pain and stiffness. When I am miserable during the day, I climb into bed and crank it up. I also use fleece sheets and blankets: I find the softness soothing. The pad allows me to turn the heat down at night, because the pad keeps me plenty warm. Maybe this would help you too.

  5. Hello,

    I moved from warm and wet (very helpful) to cold and wet climate (kill me now) a year ago. My body is still trying to adjust!

    I take stronger meds (we can talk offline) and drink lemon balm tea for pain. I bought some tight dollar store gloves and some mittens – I wear them all the time. The compression helps dull the pain, as does having nice fuzzy fabric against me. If your mittens are too thick, just cut off the tips so you can type better. Modal fabric is my best friend for painful skin; Epsom salt soaks help the painful joints. Put some rice in a cloth bag, microwave it and use it to heat your hands, neck, etc. It conforms to your body, which is quite helpful. I take frequent breaks, use the free voice software almost all computers have these days and try to figure out the limits of my hands any given day so I do not push beyond those limits.

    I’m doing a PhD in computer science, working on an app to help myself and others with chronic issues manage their disease(s). The irony is that my chronic illness has made it a slower process than I would like – I understand your frustration and send you all the love and good energy I know you will need to make it through the winter.

    1. Thank you for all your ideas. They are much appreciated. Your PhD topic sounds really interesting and I’m sure such a app will benefit many people. 🙂

  6. I also have fibro (diagnosis in 2008 but issues starting in 2002), and I live on the east coast of the US in Maryland. We have warmer winters now than when I was a kid, but temperatures can dip down to the teens in Fahrenheit. I do find that cold (and damp cold especially) make my pain worse. But it is not really the temperature. I can actually be in more pain on a 50 degree rainy day than a 32 day that is crisp. I actually think it has more to do with changes in temperature (so the lead up to winter hurts me more) and especially barometric pressure (like the lead up to a storm). So, I literally feel your pain!

    As far as helpful hints, of course everyone is different, but here are some things I’ve been doing (and tweaking) for years. Similar to Katie, I use a heated blanket with various settings. I find that is it much better than a simple heating pad since it is all over and easier to use. I imagine a hot water bottle would also work (or a warm dog or cat!), but I find weight to aggravate my pain. Even layers of blankets will kill me, or the weight of my ankles touching. I use multiple pillows to wedge under pressure points–ankles, knees, hips, shoulders (I sleep on my side), and head. I also use three different foam pads stacked on my bed to make it softer and to get me farther away from the springs.

    While I need to get enough sleep, too much laying around also gets me stiff, so some gentle yoga stretches can help. I also drink ginger tea to warm me up, and bi-weekly massage therapy to improve circulation (when I can afford it). Arnica gel is another natural pain reliever that I use, and peppermint essential oil. I also occasionally use a fabric compression brace on my hand and wrist.

    But even with all of that, eventually my pain got too severe (related to stress, I think, beginning last November), and after thinking about it for a long time, I finally decided to try a medication. Starting on March 1st, I take 30mg of Cymbalta once a day. Most of my pain has vanished, but on damp days, cold snaps, or other temperature or weather changes, I still have pain. Cymbalta has a list of side-effects as long as my arm (which is why I waited so long to start it), and for the first two weeks, I was pretty sick with nausea, dizziness, and still have dry-mouth (which can mess up your teeth). I’m doing well now.

    I wish you the best of luck! Your situation with your house and everything sounds awful. May you have more good days than bad!

    1. Hi Tiffany, thanks you so much for sharing all your ideas. I so appreciate my blogger friends to come with such great ideas. I guess it will be trial and error but I’m going to be working through the list I have. I am not able to use medication because of side effects of other meds I am on for other issues, but I am so glad that Cymbalta is helping you. 🙂

      1. Yeah, I really wanted to leave medication as a last resort. There are also suggestions for diet, too. Personally, I stopped eating (ok, let me be honest, “greatly reduced”) dairy, and I think it helped. I am really lazy when it comes to what I eat, but that could be another option. Trial and error is always the way to treat things like this. Hopefully, it will be more trial, less error 😉

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  8. Hi Cate,
    Thanks for all your supportive comments. I figure that you’re colder than me – but make sure we keep up to date with each other’s ideas on how to make this winter better. Maybe one of us will come up with something great (other than moving to Queensland!)

    1. LOL. I’m sure moving north would help me but I’m set to stay here. But the heater is on and I have an extra layer (or two) on. Who cares if I look like the abominable snowwoman? LOL Thanks.

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