Fibromyalgia Thread

[tiggspring]

Hi Tigg,

I hope your week is going better! I don't have constipation issues, more like the other type of tummy problem.

I have just tried to make my dr understand how friggin tired I am, my whole life is about sleep, sleep whenever I don't have to be somewhere or just try to stay awake until bedtime. It's been this way for at least three years but way worse this last year, and I didn't even work this year.

Ah well, I am going to try to sleep now. Tigg, when do u go on your trip. Or did I miss it that you went already? Sorry, I am just not with it these days? I know you had company before, right?

Thnaks for the kind thoughts you have been sending my way. We leave tomorrow at 4am so the kids will sleep the first few hours...my ben gay and heating pad are on stand by

As somone with both cfids and fms it always sounded like you might have both. I get the immune issues (was sick when ever I left house before purell) and sleep is my drug of choice but it doesn't make me feel better I always have a lump somwhere even in my chest, armpits that lasts a few weeks and goes away. If this is you even part time you have both. When I went for my SSI hearing before the judge I heard that my Dr put me in the worst 10pect catagory...ouch!!! After years of dealing with this I will take my pain days over my fatigue days. If this is you you have cfids. I can meditate, stretch, medicate or stubbornly will myself though my pain but the fatigue messes with my thinking, makes me unable to move, causes me to fall in general a bad case of flu all the time

My flu has ebated a bit and I've lost more weight down 37 total!!!! Lowest I'v been in 6 years. So now I just have to put my money anxiety away for a week and enjoy my DH who I have missed so much and my kids who have been such a challenge this year.

I'll be thinking of you all.

Pain free vibes and pixie dust comming your way from WDW!

 

[brighteyes]

Have a good trip Tigg!!

Oh to be there just to lay by the pool. I would just be sleeping anyways if I was there LOL

Have fun.

 

[EDuke98080]

Tigg,

Have a wonderful time! Enjoy everything!

~Erika

 

[LauraAnn630]

I havent had a chance to read the thread in awhile. I have a question I hope you all can help me with. I have been diagnosed with fibro.

For those if you who know you have it when you wake up in the morning how do you feel on your bad days?

Does the amount of sleep you get make you feel worse or better?

Im not sure if I really have it or not.

My doc wants me to take 6 ultrams a day and gabapentin. Anyone try this?

TIA

Happy Mothers Day!

 

[EDuke98080]

I havent had a chance to read the thread in awhile. I have a question I hope you all can help me with. I have been diagnosed with fibro.

For those if you who know you have it when you wake up in the morning how do you feel on your bad days?

Does the amount of sleep you get make you feel worse or better?

Im not sure if I really have it or not.

My doc wants me to take 6 ultrams a day and gabapentin. Anyone try this?

TIA

Happy Mothers Day!

Hi!

My experience is that the less sleep I get the worse the pain. On bad days it is hard to wake up and even get out of bed. All I have to do is start to move and I can feel the achy all over. I have to get up slowly. If I can get more sleep then the achiness improves. I do not take any meds except Prilosec OTC and extra strength tylenol when I am really sore. I tend to have a high tolerance for pain and also react to very low doses of medication so I tend to stay away from them.

Everyone is different but my pain level correlates direclty to lack of sleep.

~Erika

 

[Tinker'n'Fun]

 

[brighteyes]

I havent had a chance to read the thread in awhile. I have a question I hope you all can help me with. I have been diagnosed with fibro.

For those if you who know you have it when you wake up in the morning how do you feel on your bad days?

Does the amount of sleep you get make you feel worse or better?

Im not sure if I really have it or not.

My doc wants me to take 6 ultrams a day and gabapentin. Anyone try this?

TIA

Happy Mothers Day!

Well,

Well when I first started with pain, it was a pain in my upper back, like I twisted something or was getting the flu. Then it progressed to my shoulders and neck and uppper arms. I remember these days distinctly, because I wondered what on earth I had done to myself to be in such pain. Lying in bed even hurt. Then slowly over the next weeks, and months it progressed to my whole arms, wrists, hands, and fingers. My whole upper body. At the time I worked at a clinic and one of the docs did a fibro test on me. I think the pressure point test. He suspected fibro but I did not have enough of the signs. He suspected my upper body was affected because I was on my feet walking 10 hours a day and said that since I was active that my lower body was not affected. I stayed like that for the next two years, and the last three years has been downhill fast, as far as I am concerned. Two years ago I had another tender point test and was positive for 18/18 tender points. The first two years was a monthly process of getting tested for RA, Lupus, Carpal Tunnell, Lung Cancer, among other things.

On my really bad days I do not sleep very well, even though I am exhausted. I have bad days where my achiness is very bad all over my body. I also have very bad days where I have breakthrough pain that can last anywhere from a day to a week. This is very painful and constant. Usually on these days, I sleep on and off, just short naps, no sleep. I am attached to my heating pad at this point for 24-7 just to take the pain away. It doesn't take it away but I can scald myself with the heat cause the pain goes so deep.

Umm I am not sure for the layman's name for lyrica, but that is what I took up until a week ago, now I am starting Cymbalta. I also used to take amitriptilyine for sleep and pain, and am off that now.

 

[brighteyes]

Well I am off my amitriptilyne and the lyrica and started the cymbalta.

Since last week I have been feeling nauseaus, headache, diarrhea, and can't eat much, and am sleeping most of the day. This morning I also started with fever and chills. I have just finished my meds for swollen glands. So I don't know if this is from meds or from something else?? And not sleeping at night. I am up until like 4 am or 5 with a headache, and sleep till 11 am go back to bed till like 2 or 3, then sleep again from like 6 or 7 till 9. Only then do I wake up at 9 pm,. My poor son has seen me sleep all day.

My kitty got attacked by my neighbour's cat last Monday night and I just noticed on Sat he had a big abcess on his butt. I took him to the emergency vet and got antibiotics for him. We are all mashed to bits trying to give this kitty his meds twice a day. He has a cone on his head while the abcess heals. Poor kitty keeps walking into walls cause his cone gets stuck and he stays with his cone facing the wall like he is being punished. Poor kitty wakes up and can't see ahead cause of the cone if his head is too high and panicks and starts swaying around like Stevie Wonder. My poor Sylvester...

Hope all of you are having a better week than I am, I am missing most of mine cause I can't stay awake!

 

[EDuke98080]

Well I am off my amitriptilyne and the lyrica and started the cymbalta.

Since last week I have been feeling nauseaus, headache, diarrhea, and can't eat much, and am sleeping most of the day. This morning I also started with fever and chills. I have just finished my meds for swollen glands. So I don't know if this is from meds or from something else?? And not sleeping at night. I am up until like 4 am or 5 with a headache, and sleep till 11 am go back to bed till like 2 or 3, then sleep again from like 6 or 7 till 9. Only then do I wake up at 9 pm,. My poor son has seen me sleep all day.

My kitty got attacked by my neighbour's cat last Monday night and I just noticed on Sat he had a big abcess on his butt. I took him to the emergency vet and got antibiotics for him. We are all mashed to bits trying to give this kitty his meds twice a day. He has a cone on his head while the abcess heals. Poor kitty keeps walking into walls cause his cone gets stuck and he stays with his cone facing the wall like he is being punished. Poor kitty wakes up and can't see ahead cause of the cone if his head is too high and panicks and starts swaying around like Stevie Wonder. My poor Sylvester...

Hope all of you are having a better week than I am, I am missing most of mine cause I can't stay awake!

Aw Bright I hope you and Sylvester are feeling better. I was sick for 3 weeks with a fever, cold, body ache thing with a horrible cough. Finally feeling better but not sleeping well and kind of achy still. Not sure if it's from the virus or not. Hope you don't have what I did, it was rotten! keep us posted and fell better!

 

[brighteyes]

My kitty is feeling better!! He had his check up at the vet tuesday and he is healing. They took the cone off, but within an hour he had licked his wound so much it had to go back on! When the cone is off he is being a regular independent kitty, but when it comes back on he is on my or my DS within minutes and sleeping on us for hours. We always wanted him to be a lap kitty but this is excessive. Today he slept on my back while I slept.

I am hoping by Sunday he will be totally healed over. We are trying to keep him an indoor kitty but he is so sad.

I am feeling better a little better since stopping the cymbalta. I think I had a combination of the flu and the new meds side effects. The pain and stiffness is setting in. Yesterday I slept from 9 am till 1:30 pm and did not sleep till 11:00 am this morning and was awake again at 1:30pm. So almost awake for 24 hours.

So I am not sure what to do about the cymbalta, it made me feel so yucky. I am not sure how long the side effects are supposed to last. I will see what the dr says next week. It is good to finally be out of bed now and eat something but I just wish I could sleep.

I saw a FD commercial on tv the other day for Disney! I wish I could go there just to lay by the pool.

Hope you all have a good weekend. I am happy I am not nauseaus anymore.

 

[brighteyes]

Hello all,

I hope everyone is doing ok, the board has been quiet. The Good News: My kitty is better and healing, the cone is off. He is not cuddly anymore though And he is an indoor kitty now, he is soo sad.

I went to talk to a worker about my disability application because I was still undecided and he suggested I follow through to support me as I try to work part time. Although we both agreed for me to take it easy for the next few months and see where I am at in September. So that is a relief. However, I was told that they deny about 75% of applications automatically. So I will have to appeal and fight it maybe for about a year.

I had to go off the cybalta, I could not handle the nausea, the fever, the chills, and the headache. Although I still feel a little yucky. I am off all meds as of now, and am not sleeping. On the upside, I have been cleaning my house rather obsessively. Which is ok cause it wasn't too clean while I was in school. But I have stopped because of the pain.

So it appears I have a decision to make, meds to alleviate the pain a little bit and deal with cotton mouth, weight gain, runs, and not being able to stay awake. OR

No meds, feel a little more alert, have some energy to clean, but awake for 24-26 hours before being able to sleep a whopping 4 hours!

I don't know how you guys do it, being off all pain meds.

 

[brighteyes]

Hello all,

I hope you are all enjoying the weekend! It is lovely weather outside here

I just wanted to share some info with you all. I have heard about this therapy from a neighbour who told me last weekend she does not understand w hy I am in pain everyday even with the meds I take. This left me feeling sad and frustrated and like she did not believe I am actually in pain. She feels this way because she told me there is a lady she works with who does not have nearly the amount of pain that I do. She goes to "Bowen Therapy."

So last night, or early this morning in my quest to alleviate my pain Ifound articles on this. It seems like some sort of tissue manipulation. At $60.00/session which I am sure is not covered it is expensive, and with patients with fibro I would imagine it would be an ongoing cost. Therapies are usually booked weekly.

here is a link to an article http://www.bewellnow.ca/articles.html

http://www.bowentherapyclinic.ca/

After last night, I am willing to try anything. I am hoping that my school insurance will cover this. Has anyone ever heard of this? Or tried it??

I am calling them tomorow and report back to you to see what they say.

 

[EDuke98080]

Hope everyone is doing well!

~Erika

 

[Tinker'n'Fun]

 

[brighteyes]

Wanted to stop in for a bit, take a seat and chat. Haven't been much of a friend, co-poster, or anything lately. I also haven't read the thread either. So those who need one here's a , for any accomplishments here's some , for those having some great days, this is for you .

My life has been such a battle lately and I am sure most of it is stress induced. DD will be graduating from H.S. this Sunday. Such a bittersweet thing that is happening. We all go from cheers to tears daily. Another chapter in our book complete. Her childhood novel is coming to a close, and I have to start thinking of her life as a series instead of a single book.

The pains have been unbearable for a few weeks now. Pains that I have never had before. More pain meds than I can ever remember. I haven't got the stamina to do stuff, so we are eating out too much, and I am being just plain lazy (can't even get the energy to pay the bills). The upside is that there is a surplus of money in the checking acct...

I finally got a bit of relief today by keeping extra blankets on my legs. It's 80's outside and I sit here with a heat wrap and two blankets on. My mailman must think I am nuts...

Not all is bad. I have watched almost 2 seasons of CSI on our DVR so that is now a bit cleared up.

See I am so back and forth, hope this isn't too hard to understand...

Okay, last thought and it's actually a question... My body is craving calcium (milk products) so much lately that it has gotten out of hand. I don't even like milk and find myself drinking it sometimes twice a day along with cheese, yogurt, and ice cream. The lactose is hitting hard, but I can't seem to shake the craving. Any suggestions? If possible soon would be better, cause did you know milk products add extra weight on. Miss you all, Diane.

Aww Tink,

I am so sorry you are going through so much pain I am sure we can all relate, when I am in pain I do not have the energy to cook, so I get in the car - go around the corner and get take out. It's easier.

I too, get the whole growing up thing. It's hard but worth celebrating. My DS and I fight a lot, bicker about nothing in particular, because he takes advantage when I am not feeling well and don't have the energy to correct him. That is not good. We go to counselling and he told the counseller he is happy we are not arguing lately and feels our relationship is stronger, I cried. Then the next day told me that wasn't really true, just thought that's what she wanted to hear. Then said THAT wasn't true.

Don't be too hard on yourself, we all do the best we can. Sometimes that is more, sometimes less. Pain is very hard to deal with on a daily basis. I don't think others can understand until they go through it. Being a parent is hard when we are dealing with this as well. High school is such an accomplishement But bittersweet too, I can imagine.

The calcium thing, I don't know. YOur body must need it. Do you take calcium supplements? Just maybe try low-fat items? Sorry I can't help much.
But here is a hug for you. I hope your pain gets better

 

[brighteyes]

Just wanted to stop in and say hi! I hope everyone is doing well!

I am doing a bit better. Not as much pain, back on the lyrica, just trying a lower dose. Sleeping is a BIT better, I am on a sleeping pill. The pharmacist said it is addictive, so I will want to switch to something else soon.

On the other hand, I am having way more pain in my shoulders - particularly my right side of my upper body and my hips - I am having extreme sharp pains. It is painful to lay down and even to walk. I have never had pain like that in my hips before.

Hope everyone is doing better than me.

I am sad because I am not working right now, and hope to work in September, but I got a CODE from Disney and want to go. I am very sad that I can't I just hope I can work enough in the future that I can get there more often.

Stephanie

 

[Sandy1975]

Hello everyone. I'm new here. My name is Sandy. I'm 35, married with 2 daughters (14 and 4). My DH (36) was recently (May)diagnosed with Fibro. He is devastated. Looking back over the last 10 years, I see the symptoms now. He has always been one to be on the move and could fix anything around the house. Now, there are some days that he can’t sit long enough to type up a report for work. It seems to have progressed SO fast! We were sure it was cancer at first.

The day he was diagnosed, we came home and booked our vacation to Disney. We are afraid he won’t be able to handle it a few years from now. He is taking some medication and it seems to help some days with his pain and fatigue, but he has bad days. He is no longer the same person. Maybe it is just because he is still struggling with dealing with his diagnoses, but he gets really depressed, which is SO not like him.

Our trip is scheduled for July 5-12. We just upgraded from AS Movies to PO Riverside because of the hot tub. We are celebrating our daughters 5th birthday while we are there, and have scheduled a ADR at Akershus on her birthday for breakfast and both girls are getting treated to BBB the evening we get there.

I'm concerned that my DH is going to get tired and get upset with himself for slowing us down. We have talked about going out early, and then coming back to our room for a couple hours in the afternoons (during the hottest time) and then going back out. But he says he is afraid of not being able to go back out. He said that napping/resting might only give him another hour. Does this sound normal to you?

thanks, I guess i just needed to talk.

 

[Tinker'n'Fun]

 

[Sandy1975]

thanks. We talked a little more yesterday, and he has been having some better days, I guess we'll see when we get there and go day by day, or hour by hour.

 

[brighteyes]

thanks. We talked a little more yesterday, and he has been having some better days, I guess we'll see when we get there and go day by day, or hour by hour.

Please tell your DH that this is a work in progress. Ihave had symptoms for five years now and diagnosed for two or three, (can't remember). I too have gone downhill fast the last three years, due to stress I think.

I am still learning my limits and how to cope. I just go day by day now. That seems to help.

As others have said, Disney is different for everyone. I don't seem to be AS bad at Disney but have had a few bad days. But I don't push myself. I find that to work best for me. I think it's better at Disney because there is NO stress at all. I truly feel like it is the most magical place on earth. That helps a LOT

Counselling may help your DH. It is hard to not be able to do the things you want or be the person you were. I still struggle with that sometimes, as I am sure we all do here.

If he wants to post to talk about it, we are here. We are here to listen if he just wants to ***** and complain about how lousy he feels, to ask questions, or just to vent.

These wonderful ladies have helped me through the last two years of a gruelling full time school schedule. They have listened to me ***** more than enough. We understand here what it is like. It helps.

I must say, I love you guys. I only hope I have been a help to someone as you have been to me.