[lizardlady]

I posted here so much when things are bad I thought I'd post to say today is an OK day. Pain level is "only" about a three (that's a "normal" day for me) and I'm "just" tired, not exhausted.

Sorry that sounds like poor me when I read it. I'm not trying to say poor me. I'm trying to say I'm having a "normal" (for fibro folks) day. Oh heck, I'm making a hash of this. I'm going to shut up.

[lizardlady]

My turn to vent....

one day this week a co-worker started making suggestions of things I should do so I would feel better. I politely said "I appreciate your suggestions. I've tried everything my doctors have suggested. Those things really don't help."

Her reply "You shouldn't have to feel this way."

To which I replied, "I prefer not to think about it that way. It leads to me sitting on the pity pot."

Her reply "You don't have to be grumpy. I was only trying to help."

Honest to pete, I was not cranky. I was not short. I was not "grumpy". I answered her in a level, pleasant tone of voice. Had I been grumpy, cranky or short I most likely would've said something like

"You're dammed straight I don't deserve to feel like this! There are days I rage internally against the unfairness of it. But you know what??? Life at fair!!! This sucks! I hate it! But now of the hare brained ideas you are suggesting are going to do the first dammed bit of good so shut up and leave me alone!!!!!!"

[sabby]

Thanks (((((((( Lizardlady )))))))))

Oh yes, I'm pretty good about giving myself permission to rest and take my time at things when I feel like this. Only problem is that I still feel terrible when I can't get off my duff and do something. I know it's not my fault per se, but it's frustrating to me most of all I guess.

So, I'm hanging in there.....resting when I need to and I forgot to call the doc yesterday about the does of Lyrica. *sigh*

[kipper-bang]

Glad I found this thread. I've had Fibro and possible Sickle cell for 40yrs. First there are many types of Sickle cell and I've been tested for only one which came back negative. My symptoms shout of SC but I'm waiting for more tests. I definitely have Fibro. and I hate it. Its hard explaining to people that you would love to do certain things but the never ending pain prevents you.

I went out at the w/e to celebrate my mates b'day. On Saturday I could not move because the pain was burning through me. I took my usual Oxy meds and also ibuprofen/Paracetamol mix. Instead of 10hours relief I only got 4hrs. Its now Monday night and only now is it easing up.

So for those also suffering Chronic Pain, my thoughts and love are with you tonight.

[sabby]

Welcome kipper-bang! I'm sorry you also suffer with fibro and possible SC. Gentle *hugs* to you!

Doc has not prescribed me anything for pain. I don't think she likes to do that and I don't push it, but the time is coming that I may have to push it. It's taking me longer and longer to recover from going grocery shopping or doing some laundry or even just cleaning the apartment (just a few things at a time).

I so get that it takes too much time to recover and sometimes it seems you don't get all the way recovered for weeks on end. ugggh If I'm lucky, I get one day a week where I can almost function fairly normally, then it's all down hill again.

Please let us know how your testing goes for the SC. I'll keep you in my thoughts and prayers!

[kipper-bang]

Hi Sabby,

Thanks for your reply. Sorry I took so long to get back to you, but I had another death in my family. Its awful when you cant do what you want each day and have to explain to others what is wrong with you. Unlike other illness we Fibro sufferers look so well and healthy.

My last really bad time was after a friends party. I got up and danced to three records over the course of the evening. Not many for me as I used to live on the dance floor. The next morning I could not move and my usual pain killers did noting to stop the burning agony going through my whole body. It was 3 days before I could function again.

The SC blood tests take months to come back so its a waiting game over that.

Thank you for caring x

[sabby]

Oh dear, I'm so sorry to hear about the death in your family. Gentle thoughts going out to you.

Have you ever done something physical and found it took 2 or more days before it hit you? That's happened to me before and it's kind of frustrating ya know? It makes it hard to figure out just what put me in so much pain and/or foggy brained when that happens. Oh well, moving on I shall do...lol.

I didn't realize it would take so long to get the blood test results for Sickle Cell. Wow.... I pray they come back negative!

Good to see you back kipper-bang!

[Travelinglady]

Sigh. I've been trying to be more physically active and my fibro has kicked in big time! I am taking Tramadol, Hydrocodon, and Acetiminophen. Not helping now. My pdoc is asking me to consider Cymbalta.

[sabby]

I found Cymbalta to be quite helpful for a few years, and then I needed something more and doc put me on Lyrica with the Cymbalta.

I liked the Cymbalta but I can tell you may be very difficult to titrate off of. I had a few times a couple years ago where I had run out of meds (don't remember why) and I also had forgotten to take them a couple of times as well and it made me feel really yucky yucky yucky.

You may find that it takes the edge off enough to let the other things your on work a bit better Trav. I would give it some good thought.

[kipper-bang]

Thank you for your kind support, Sabby.
While I was away sorting out mums business I ran out of pills. I was only expecting to stay away for 2 weeks but with the post mortem and family coming from abroad everything was delayed by 2 extra weeks. I went to see a local Dr to get extra medication and told him what I was on for Fibro pain. I take 80mg slow release, Oxy twice a day, and have 20mg tabs to top it up if needed.

He told me I was on the same medication he prescribes for Cancer patients in their last stages!! I was shocked by this as my own GP was happy for me to be on this amount, and did not mention any issues with it. This new Dr also suggested I try Mirtazipine for the pain and slowly wean myself off all the Oxy's.

To come off Oxy, cold turkey would be dangerous and make me very ill in the process. I have a big move on the horizon and a new lifestyle in front of me so I'll wait a few months before doing anything drastic.

Thanks for your support. x

[sabby]

Hey kipper,

I know that long term use of opiates for pain can actually make your pain worse in the long run. The body works up such a tolerance to them to the point of needing more and then more and then more to give you the same pain relief you had in the beginning with a smaller dose. Do you think this is what may have happened over the period of time you've been on the oxy's?

You are absolutely right about having to titrate down off the opiates over a good amount of time. Very hazardous to ones health and life if not done properly.

Sounds like you've got a lot going on in your life right now. I hope you are doing what you can to take care of yourself through your grief and life changes coming up. You deserve to be good to YOU!

[kipper-bang]

Hi Sabby,

You have given me good advice and I feel you may be right about the build up of opiates and how they lose efficiency over the years. They also slow me down a lot making me sleep more and exercise less. A walk down the road can exhaust me, and I now don't know if its due to Fibro or too many opiates?

Once I move and feel settled I can make big changes in my health, exercise and diet. For now I am treating myself kindly with no exhaustion and keeping up my vitamins. x

[sabby]

Good for you Kipper at doing your best self care. I find it difficult to do sometimes when I know things need to get done, I just push my way through it and pay for it later. I'm getting better at my self care though, so there is some hope for me....

[grandma21964]

For me it has been awful, ugh!

One day I'am pain free next day I feel a ton of weights hanging off me. I slow as molasses in winter.
I need a support group near my home and there is not one. The closest is an hour and half away.
I have had Fibro I think all my life. but diagnosed in 2007.

Its not easy. but I try to stay somewhat active when I have good days.

Thats me

Grandma

[sabby]

Awwwww *gentle hugs* to you grandma. As I have said before, this illness ain't for the faint of heart!

I'm sorry there is no support group near where you live. Have you looked around online for anything that might be like that, say using Skype or something like that? I don't know if there is anything out there or not, I've never looked for a support group for fibro.

All I know is that it's really hard to plan things when you never know what you will feel like on any given day.

I hope tomorrow is a good day for you grandma.....take good care!

[jkomanchuk]

Originally Posted by skymonk

Are you on any regular pain meds&do you have a Dr that specializes in the treatment of fibromyalgia? I see a rheumatologist&he's helped to a certain extent. My pain is only 50% controlled&my Dr seems to find this acceptable, but I don't&I can't afford to go to the ER when I have an especially bad day. I know someone else who has fibromyalgia that gets 2400mg of morphine&9 Percocets a day. That's way too much! I'm stuck w/the same pain med that I've been on since 1997-Vicodin. It's better than nothing, but not really helpful. Have you found any coping skills that work or a daily routine of how much activity you engage in or maybe even some excercises that help relieve the pain? I'd love to hear any suggestions that anyone may have.

I had fibromyalgia for more years than I can remember. It was devastating. No matter what I tried, both medical and holistic, nothing helped. The chronic pain just kept getting worse. I could no longer teach. Unable to look after my home, my sweet dogs or myself - I was making plans to spend what remained of my life in agony in a nursing home. It was then, thanks to an uncle of mine, I discovered the beautiful mind, body, spirit wellness work of Joy of Healing. Thanks to them I have been both pain and prescription free for more than 13 years. Thanks to them I have my life back.
Keep searching for what works for you. Trust your intuition to guide you and never give up in your search for wellness.

My fibro has largely been in "remission" for quite some time now. Am not on any meds. Just sometimes when I exert myself physically, I'll get a little sore but nothing like the horrible flares I've had in the past.

[buffieann]

Hi, new to the forum. But hearing your stories I can relate 100%. I was diagnosed with fibro almost 15 years ago but I've been living with it a lot longer than that. I'm 43 married with two children 9 & 11. I've had a lot of health problems over the past 4 yrs and been in and out of the hospital. Finally last October I went through major surgery that was a success. I thought for sure I could start to live a normal active life again. I was looking forward to actually participating in my children's life's again instead of watching from the sidelines but that hasn't been the case. My fibro has actually gotten worse. I think it might have to do with the brain focusing on my other pain and also the fact that I was on Vicodin every 4 hrs for 4 1/2 years just to control the abdominal pain I had. I am on Lyrica now. I've always called it my miracle drug but it's just not working the way it use to. I can't take a lot of the medication normally given to people with fibro because of my bipolar. I've always been a strong person but I'm starting to give up hope that I will ever be pain free. I'm so exhausted all the time mentally and physically. The pain just wipes out every trace of energy I have and then the guilt sets in. I'm so tired of watching my kids have fun without me. I'm tired of being in pain all the time and trying to explain to my family and friends why I don't want to go out and do things with them. I use to be so physically active now I am in a constant battle with my weight even when I eat right I only lose a couple of pounds. So then I starve myself and lose 20 lbs only to put it back on in a week. I can gain 10 lbs in two days. I know it's the Lyrica that contributes to some of this. But if I stop taking it the pain becomes unbearable. I was walking 3-5 miles a day that helped but then I had surgery and shortly after that I fell on the ice and broke my ankle and had to have surgery after that. Of course the depression set in and all I did was eat junk and gain 50 lbs. thankfully for now the depression has lifted. I use to be so optimistic always happy but as the years go by and the pain continues I find it hard to be optimistic. Im not the poor me type it doesn't do any good but I've been asking why me a lot lately.

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[sabby]

buffieann

Welcome to PC and to the Fibro forum.

I'm sorry that you are suffering from this gawd awful illness. I wish I could snap my fingers and your pain would vanish for a day so you could play with your kids or go for a good long walk without suffering. Alas, it's only a dream, but I can pray that you find a day here and there where you can do some things more than now.

I, too, suffer with fibro and it is a battle. This morning was a really bad one for me with the brain fog. I was so aware of the fog that I felt really uneasy, it was probably the worst fog I had ever suffered from. By about 4pm I was feeling a bit more with it, but gosh be darned, it was a long few hours before I knew what the heck I was talking about. *sigh*

I'm on Lyrica and Cymbalta and the combo works quite well for me pain wise. There are some days that are not so good, but they are spread further out than they used to be..so that's a good thing.

Exhaustion is horrible though. Sleeping is horrible. Exercise...yeah right. Eating right, trying to.

At least we have each other here.....we understand each other and support each other through the good, the bad and the ugly.

Welcome!

[buffieann]

Hi Sabby, thank you for sharing with me. Just hearing from somebody who understands what it feels like helps. It's 1:30 am and I've been tossing and turning for 3 hrs now. I thought for sure I'd be able to sleep after only getting two hrs of sleep last night. I wasn't in that much pain when I shut out the lights. But as it got later it's gotten worse making it impossible to sleep. I'm just so exhausted reading your message just now made me feel not so alone. I'm off to try again to sleep hoping the muscle relaxer will work tonight. It usually puts me to sleep and gets me a good 4/5 hrs but not the past few nights. I know it's flaring up from all these thunderstorms we've been having lately. Thank you and a big hug to you.

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[sabby]

Not sleeping really stinks.

I hope you were able to get a few hours....we've had lots of thunderstorms here over the past 24 hours or so. Some pretty severe ones....I love them but my body isn't too impressed with them these days. LOL Gotta laugh sometimes, can't always be a debbie downer eh?

Gentle 's to you!

[buffieann]

Finally did get some sleep. I've always been fascinated by weather. I use to watch the weather channel all the time but now I don't need to I've got my own built in radar. Lol. Hope you have a good day! Thanks for listening.

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[sabby]

YAY for some sleep!!!! Glad to hear it.

I did a dumb thing today and forgot to take my morning meds,

I hate when I have to get out of the house for appointments and it's too early to take them, then when I get back, it's too late to take them. In the mean time, the fibro pain sneaks up and bites me a little harder and I have no energy to bite it back!

[buffieann]

With my Lyrica I'm allowed to take it 3x's a day but I try not to because of the weight gain aspect. My problem is that if I'm not in pain before I go to bed I forget to take it. Then i wake up in pain and it's to late. I don't know what's going on with me right now but the pain is so bad that I can't sleep. Yesterday was a good day not to much pain. Just exhaustion from not sleeping the night before. I took my last Lyrica at 7 or 8. Thought I was finally going to get a good night sleep but as soon as I closed my eyes I felt the pain. I was up all night. The weather was nice so I know that wasn't it. It's never been this bad. I slept a little today but only felt worse when I woke up. My poor kids have been stuck in the house for a week now. I want to do stuff with them but I'm exhausted from no sleep and the pain drains the rest of my energy. I'm at a loss of what to do. There's so many meds that that I can't take for the pain because of my bipolar disorder. I'm tired and frustrated and angry. In the past I've always been able to keep myself busy and ignore the pain. Mind over matter. But not in the past two weeks it's just getting worse and worse each day. I hate being like this. Feeling so useless. My husband is great he doesn't say a word when he comes home to a dirty house. He just starts cleaning up. But then I feel so guilty. Any suggestions? I'm Desparate!

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[buffieann]

I finally slept through the night and woke up with no pain! Today is going to be a good day!

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