Fibro friends check in

[Shugardrawers]

HOLY COW Where have we been?? We should all be ashamed of ourselves

I had to go re-read the whole thread to jog my memory (you know that whole fibro fog thing) so in no particular order

My PCP actually DID check my vit D level and that's how he changed his diagnosis from CFS to Fibro. He'd begun to suspect it was Fibro and when he got the results of my CBC he said my vit D was "appallingly low" I take a weekly Rx dose of vit D and it's STILL not up to par He's says that's a big indicator in many cases. He also found my thyroid levels to be all over the board which he said was another red flag. But the thing is, he told me many if not most patients don't have markers that show up in blood work.

After having heart to heart talks with all my treating Drs, and finding them 100% in favor, I filed for SSDI I still keep telling myself and anyone who'll listen this is only temporary. Delusion is a wonderful thing

The ankle is getting better and hopefully I'll be 2-footing it soon but I'm still frustrated as all get out. I've been blaming all my difficulties in getting things done around the house on the ankle but the truth is, 6 weeks out, I'm still exhausted, I still can't sleep, I still ache everywhere and I still can't shake the sweats and low grade fever (and there's NO infection) And my Dh thinks I don't love him anymore because I just don't want him to touch me right now. It hurts just to to be hugged, and if he wants to pursue things...

I think I've sunk as low as I can possibly go. I've been paying my neighbor to clean house for me every Tuesday. By my best estimate she's in her early 70's She's in better health than I've been for the last 7 years

I look at my wedding portrait sitting here on my desk and wonder where that happy, healthy woman went So does The Muffin. He tells me every day he just wants his wife back. He doesn't understand yet he's not going to get her.

 

[RNMOM]

I second the "I'm cold and I HURT" sentiment. I have NEVER felt this bad in winter before. Wait, it isn't winter yet.

I just can't get warm. I have heating pads and an electric heater along with warm fleece throws and cats. Right now I am so cold I can't bear it so I am going to bed. Night all.

 

[TLSnell1981]

:

I just can't get warm. I have heating pads and an electric heater along with warm fleece throws and cats. Right now I am so cold I can't bear it so I am going to bed. Night all.

That's the part where our "thermostats don't work".

I also have the "heating pad, electric heater, cat thing going on. Bless my cats. They sure keep my feet warm.

 

[binny]

My thermostat goes the other way, I am hardly ever cold. Well with the exception of sitting down here on the main floor lately, the furnace is still broken!

I dont even want to know how cold it is here. At least it is nice and warm upstairs they fixed that furnace last week.

 

[mommasita]

My thermostat goes the other way, I am hardly ever cold. Well with the exception of sitting down here on the main floor lately, the furnace is still broken!

I dont even want to know how cold it is here. At least it is nice and warm upstairs they fixed that furnace last week.

HI there.

Congratulations on the job!!!!!! I am just back from my cruise holiday and read it!!! How wonderful.

Cold OMG it is awful here.

I told my hubby we need to win major $$ to move to a warm climate. We were in Florida a for a few days prior to the cruise and I never felt any pain. Home less than 24hrs and . Thankfully i do not work until Thursday...

Hope everyone is doing well enough

 

[tigercat]

I'm not sure what is going on with me right now. My ankle is really sore and I am actually getting cold. I am usually warm. I am so tired and everything hurts. Also, I am having problems with my IBS problem as well. I am so worried about eating and then going out. I have to go to work tomorrow and I would really just like to stay home and sleep. I have to look after my parents on Saturday mornings as my mother is dying of cancer and my father can't be left alone. It is hard emotionally and physically as well. Thank goodness there is enough of us so that I just have to do one shift. On Sundays my dd and dgrkids come to spend the day. I get really tired. I am really happy to see them and enjoy my time with them but I don't stop. Last week I just wanted to cry and run away. Work is not hard but my bosses don't know how to work and don't. Hindering my work which just frustrates me, which also makes things worse. Sorry for meandering but my thoughts are all over the place right now.
tigercat

 

[mommasita]

I'm not sure what is going on with me right now. My ankle is really sore and I am actually getting cold. I am usually warm. I am so tired and everything hurts. Also, I am having problems with my IBS problem as well. I am so worried about eating and then going out. I have to go to work tomorrow and I would really just like to stay home and sleep. I have to look after my parents on Saturday mornings as my mother is dying of cancer and my father can't be left alone. It is hard emotionally and physically as well. Thank goodness there is enough of us so that I just have to do one shift. On Sundays my dd and dgrkids come to spend the day. I get really tired. I am really happy to see them and enjoy my time with them but I don't stop. Last week I just wanted to cry and run away. Work is not hard but my bosses don't know how to work and don't. Hindering my work which just frustrates me, which also makes things worse. Sorry for meandering but my thoughts are all over the place right now.
tigercat

You have a really heavy load on your shoulders, in addition to the pain of fibro. I am so sorry for all you are going through.

I know about wanting to cry and run away, it is hard at times. I hope and pray it gets a little easier for you.

Never be sorry for posting your thoughts. We are a family, and all here for you.

 

[binny]

HI there.

Congratulations on the job!!!!!! I am just back from my cruise holiday and read it!!! How wonderful.

Cold OMG it is awful here.

I told my hubby we need to win major $$ to move to a warm climate. We were in Florida a for a few days prior to the cruise and I never felt any pain. Home less than 24hrs and . Thankfully i do not work until Thursday...

Hope everyone is doing well enough

Thanks
We are very excited about it.


tigercat (((hugs))) please dont feel bad for sharing here. We all have times where life is a little more than we think we can handle.

 

[tigercat]

Thanks for all the kind words. Things have been "not fun" for me for a little while. What I didn't post is that my best friend has been diagnosised with bladder cancer that is really agressive. He had his bladder removed last Tues. and is not in ICU. I didn't get to see him the week before because I had to go away for my dfil's funeral. It seems my friend really got sick the week I was away at the funeral. My dr really thinks that there is nothing really wrong with me except I am under a little stress. I really don't think she thinks of the fibr diagnosis and how it pertains to me. I keep hoping that my IBS will clear up as well because that is really hard on me as well. And work...my boss's just don't see the need to give me the info I need. I just found out last Fri that I have been working on the wrong menu's. The menu's had changed but they didn't get around to telling me. The kitchen finally came and asked me why I was doing what I was because I was crossing out the wrong things and not crossing out the things I needed to cross out. She gave me the right sheets. I still haven't seen it from my boss. How do people that really are not capable able to get jobs that need someone capable in them? I need a nap. Thanks for listening
tigercat

 

[SeaSpray]

Hi everyone

I have been meaning to post to this thread for a long time now, but life has been very crazy (and not in a good way) for several months now.

Anyway... I have fibromyalgia, IBS (irritable bowel syndrome), RA (rheumatoid arthritis), plantar fasciitis, among other things. But one thing that I recently found out that I DON'T have is the breast cancer gene mutation. *whew* I just found that out last Friday, after learning last July that the mutation exists in our family (my sister has had breast cancer and has tested positive for the gene mutation).

Anyway... I have a specific question for my fellow fibromyalgia sufferers: Do any of you ever get severe tooth/jaw pain? I do, and it was so severe last year that I went to my regular doctor, regular dentist, ear nose and throat doctor, AND finally to the oral surgeon. Everything was ruled out (sinus problems, TMJ, etc) and the oral surgeon said that the extreme pain that I was (and am again now) experiencing is from the masseter muscle that runs along the jawline. He said that many people with fibromyalgia also get pain there. Do any of you experience this?? When it gets bad it gets REALLY bad, to the point where my regular doctor has prescribed a muscle relaxer and Vicodin, to use at night when it gets bad, so I can sleep. I really make an effort to not over-use these medictions; most of the time I just suffer with the pain, and during the day I'll take Advil to bring the pain down to a manageable level.

 

[RNMOM]

SeaSpray, yes, I do. I had to have a molar extracted a couple weeks ago after it broke off. It was a root canaled tooth and I plan to get an implant in a few months. Anyway, I wasn't able to wear my night guard that keeps me from grinding my teeth. I had so much pain and tightness in my cheek and jaw muscles. I finally called the periodontist and asked if I could wear my guard. He okayed it and it improved back to normal, for me.

I often get sharp stabbing pains when I eat fruit or something tart. Even things like bubble gum flavor, tootsie roll suckers or an apple will do it. My nurse friends tell me it is my salivary gland. It seems to spasm and then eases up. I have always had this but it too has worsened.

As a side note, my DH (electrical engineer) was just standing behind me in the path of my heater. He then asks me how much electricity it uses, did I notice an increase in the bill, etc. I haven't noticed an increase at all. He then goes on to figure how many watts/hours/kilowatts, WHATEVER. He decided it is less than 40 cents a day. Yeah, like I would stop using it. He's not a cheap kinda guy and I found this really funny. I reminded him it keeps me from uping the thermostat and warming the entire house up. Whenever he even mentions something costing money I remind him of his wine fetish. He drinks about 3 bottles a week or less but he goes on a quest for just the right wines. I hate the stuff personally.

 

[wehavesix]

Hi all! I was dxed with fibro about 8 years ago but have had symptoms since I was a teenager. I guess I'm usually on the mild side of things. Cold doesn't bother me too much but damp weather sure does. It doesn't matter if it's cold or warm, if the weather is damp, I'm not in a good place.

I take Cymbalta daily and since starting it about 2 1/2 years ago, I have had fewer bad days. I still have a prescription for Flexeril that I will take once in a blue moon but only if the pain in my back and shoulders gets really bad.

This summer I fell down some stairs and broke my leg and arm. My right tibia was shattered. My fibula was badly broken and my left arm was fractured near my wrist. I had to have surgery to repair my leg. That was rough, let me tell you. I couldn't do ANYTHING but lay around. Of course the more I lay around the worse I felt. Finally the bones healed but then I had to have another surgery just over a week ago. I had some screws and wires removed from my leg and I had a cyst in my ankle that was removed. The dr thinks the metal caused the cyst. I get my stitches and staples out tomorrow so hopefully that will be that and I can really get over this broken leg thing.

Well, enough rambling from me. I'm glad to have found this thread and some other Disney fans with some of the same physical issues I face.

 

[mommasita]

Seaspray that is GREAT news that you do not carry the gene.

Yes, I do get the pain in the jaw, tooth, etc. Especially on the jaw line..

Welcome wehavesix , not sure if I did that already, but with my memory and fog I never know.

This is a great supportive thread.

 

[SeaSpray]

SeaSpray, yes, I do. I had to have a molar extracted a couple weeks ago after it broke off. It was a root canaled tooth and I plan to get an implant in a few months. Anyway, I wasn't able to wear my night guard that keeps me from grinding my teeth. I had so much pain and tightness in my cheek and jaw muscles. I finally called the periodontist and asked if I could wear my guard. He okayed it and it improved back to normal, for me.

I often get sharp stabbing pains when I eat fruit or something tart. Even things like bubble gum flavor, tootsie roll suckers or an apple will do it. My nurse friends tell me it is my salivary gland. It seems to spasm and then eases up. I have always had this but it too has worsened.

As a side note, my DH (electrical engineer) was just standing behind me in the path of my heater. He then asks me how much electricity it uses, did I notice an increase in the bill, etc. I haven't noticed an increase at all. He then goes on to figure how many watts/hours/kilowatts, WHATEVER. He decided it is less than 40 cents a day. Yeah, like I would stop using it. He's not a cheap kinda guy and I found this really funny. I reminded him it keeps me from uping the thermostat and warming the entire house up. Whenever he even mentions something costing money I remind him of his wine fetish. He drinks about 3 bottles a week or less but he goes on a quest for just the right wines. I hate the stuff personally.

I think I need to get a mouth guard. I don't grind, but I clench straight down, tightly. I think that's what triggers the intense pain. It starts in my molars but can radiate out to include the entire side of my head.

I LOVE my heating pad! LOL In fact, when my jaw starts to really hurt I hold the heating pad to the side of my face and usually the pain starts to subside.

Your DH sounds like mine! LOL My DH is an electronic circuit board designer (he also writes programs, etc), but he's always thinking in those same terms. lol

Hi all! I was dxed with fibro about 8 years ago but have had symptoms since I was a teenager. I guess I'm usually on the mild side of things. Cold doesn't bother me too much but damp weather sure does. It doesn't matter if it's cold or warm, if the weather is damp, I'm not in a good place.

I take Cymbalta daily and since starting it about 2 1/2 years ago, I have had fewer bad days. I still have a prescription for Flexeril that I will take once in a blue moon but only if the pain in my back and shoulders gets really bad.

This summer I fell down some stairs and broke my leg and arm. My right tibia was shattered. My fibula was badly broken and my left arm was fractured near my wrist. I had to have surgery to repair my leg. That was rough, let me tell you. I couldn't do ANYTHING but lay around. Of course the more I lay around the worse I felt. Finally the bones healed but then I had to have another surgery just over a week ago. I had some screws and wires removed from my leg and I had a cyst in my ankle that was removed. The dr thinks the metal caused the cyst. I get my stitches and staples out tomorrow so hopefully that will be that and I can really get over this broken leg thing.

Well, enough rambling from me. I'm glad to have found this thread and some other Disney fans with some of the same physical issues I face.

Oh you poor thing!! I really hope that you can finish healing all the way, from the broken leg.

I've been taking Lyrica for about a year now, and I do think it helps.

 

[SeaSpray]

Seaspray that is GREAT news that you do not carry the gene.

Yes, I do get the pain in the jaw, tooth, etc. Especially on the jaw line..

Welcome wehavesix , not sure if I did that already, but with my memory and fog I never know.

This is a great supportive thread.

Thanks. I was so immensely relieved to find out that I didn't inherit the mutation because it would've meant having my ovaries out right away, and then face the idea of a bi-lateral prophylactic (preventative) double mastectomy. This doesn't mean that I'll never get breast or ovarian cancer, but at least I won't have a 90% chance of getting it, only 12-13%, which is what they call "general population" risk.

I'm hoping that my clenching will ease up a bit now that I don't have the stress of worrying about those tests results anymore.

 

[Shugardrawers]

OH HOLY CRACKERS YES!!! My jaw is a killer for me! My biggest trigger points are the base of my skull, jaw and neck and shoulders. A night guard help a little. My Dr put me on Effexor and that has been somewhat helpful as well. I can't say this will work for everyone, especially on a day when you feel particularly tender, but this little baby has been GREAT for helping me relieve that pain
http://www.homedics.com/products/ma.../therapist-select-shiatsu-massage-pillow.html
I have another on the same site that wraps around my neck and it's great as well.

If anyone is willing to talk with me about how to handle....."delicate matters" with my Dh will you please pm me? Like when I just hurt so much I only want to go to sleep and he...well, he doesn't? I know I hurt his feelings and I feel really crappy now

 

[mommasita]

OH HOLY CRACKERS YES!!! My jaw is a killer for me! My biggest trigger points are the base of my skull, jaw and neck and shoulders. A night guard help a little. My Dr put me on Effexor and that has been somewhat helpful as well. I can't say this will work for everyone, especially on a day when you feel particularly tender, but this little baby has been GREAT for helping me relieve that pain
http://www.homedics.com/products/ma.../therapist-select-shiatsu-massage-pillow.html
I have another on the same site that wraps around my neck and it's great as well.

If anyone is willing to talk with me about how to handle....."delicate matters" with my Dh will you please pm me? Like when I just hurt so much I only want to go to sleep and he...well, he doesn't? I know I hurt his feelings and I feel really crappy now

I wish I had some type of answer for ya. I have those same issues, and I wish to God he was more understanding. He is a good man and all, but he does not 'get it', and why we have to feel the guilt is just over the top for me, but we do, won't we


I hope everyone has a somewhat better day today, as good as can be expected.

I have 2 Dr's appt today, and I am just dreading them

 

[wehavesix]

For reasons I won't go into, I don't have issues with my dh over intimacy. Let's just say I'm not the only one with health concerns. We have a loving relationship but the physical side is few and far between, which is okay with me.

I have a doctor's appt this morning, too. But I'm happy about it. I'm getting the stitches out of my ankle. The incision over my ankle is about 3 1/2 inches long. It starts on the top of my foot and goes up along the front outer part of my right leg. That's where the cyst was. I'm also getting the staples out in the places where he removed the screws: 2 just under my knee and one on the inside of my right ankle. These screws were rubbing and irritating the heck out of me. The rods and some other screws will stay in unless they start causing problems too. I sure hope they don't because I don't want another surgery.

I'm hoping after this is over with my leg, I can start back exercising. When I exercised most days, I felt so much better. I'm not talking a hard workout. Just a little daily time on an elliptical or a 30 minute walk. But it made all the difference in how I was affected by the fibro. Anybody else find exercise to be helpful?

 

[binny]

How is everyone feeling?

Its snowy here but it will melt soon I think.


We did a whirlwind trip over the weekend, 8 hours each way for a wedding recption. Left Saurday came home Sunday. I was pretty sore last night by the time we got home. That is too much sitting in one position for me.



on a bright note, my brother called the other day and asked if we have bought the Wii Fit yet and when I said no but it was something we really wanted he said "well dont go buy one" LOL he is subtle
I am so grateful though if we do get it because I am sure I will put it to good use!



Is anyone else on a diet? I am really trying to lose weight again. I cant live with myself like this anymore. I felt so much better when I was excersing more. We havent been able to afford the gym for a long time now so that has gone by the wayside. I need to get back into that habit though.

 

[mommasita]

HI there.

SOunds like a busy weekend. Did you have a good time? Then it was all worth it.

Today is voting day here, so no school, makes the day a 'little' more relaxed, or not . I have both home and I like that. We will do some shopping and perhaps decorating.

We are in sub zero temperatures, VERY sub zero. Odd for this time of year, but what can you do. So, I am very sore. I have a Dr's appt on Wed and then see my rheumy on the 30th. I don't know what exactly I am looking for, but just to see how things are generally going I guess. Winter is the worst for me, and I have to push my butt daily to get things done, and to get to work. I would go on, but this is not the place.

I am "trying" to eat better, but I have ZERO willpower. I honestly do think eating better makes you feel better. Exercise I hate, but push myself. The WIFIT sounds great!!!!!!!!