Fibromyalgia Thread

[EDuke98080]

To tired to respond to posts...just thought I'd send a hidiho!

Hi Tigg!

Hope you are doing ok!

 

[SeaSpray]

Hi All!

Hope you aare all doing better than I am! I fell this week, tripped actually and landed flat and hard on my butt. I twisted my ankle and bruised my arm and really aggravated my herniated disks. Ugh so much pain! On top of that my Thanksgiving dinner for 11 has turned into dinner for 22 and overnight guests. Normally I love to do the holiday even though it exhausts me but I am fairly useless at the moment and I know it is not going to be as perfect as I will want it to be. I have spent most of the week on the couch with my tens machine on my back while watching my DH bust his butt to finish riding the yard of all the damaged tree limbs from the freak snowstorm we had AND do all of the household work AND cart me around because it hurts so much to sit that I cannot drive. I feel really guilty watching him work so hard while I am the giant lump on the sofa.

Happy Thanksgiving to everyone, I hope it is relaxing and pain free!

Erika

I'm so sorry to hear about your fall. I hope you're feeling a little better now. How was your big dinner? We only had the 4 of us (plus DS's DGF who came over later for dessert, which she baked for us), and I was exhausted. That's great that your DH took care of so much.

I can't imagine doing Thanksgiving for 22! I'm barely able to think about our dinner for 9 & I'm not even hosting it! But we do have to make the turkey, gravy, cranberry sauce, and if I'm up to it, a few sides or a plate of sides I can eat. My food intolerance issues make it tricky to eat anywhere, so I have to bring my own. I'm just so Grateful my Mom insisted on hosting this year. I can barely drag myself out of bed right now.... still recovering from our trip.

Last week was insane with Drs. Left Rhuematology in tears again. My PCP is firing this rhuem & sending me to another one because they have been supremely unhelpful, they keep blaming my AIDS even tho my ID Drs are telling them this is not AIDS related. (My T-cells are higher than they've been in 17 years) Then I had a 3 hour appt. for my 2nd opinion from GI & that was actually wonderful. They are really working hard at getting me some relief from the constant nauseau.

DH & I also came to the decision it's time for me to stop working again. I have only been working part-time with DH at his office, but I can't even keep up with that anymore. It's best for all of us if we get someone dependable in there to relieve the stress from all of us. I'm relieved that I'll be able to take care of my body right now, but also feeling nervous about the financial ramifications & about feeling like a burden.

I am looking forward to things calming down a little.... does that ever really happen?

How frustrating, having to keep trying to find the "right" doctors, while you're so much in need of some relief. I can understand your decision to stop working. Due to the company that I work for being in bankruptcy, I only have until the end of December to work, and boy that cannot come soon enough. I am constantly exhausted and fighting sore throats, etc.

To tired to respond to posts...just thought I'd send a hidiho!

I can relate to this. It took me a few days to get back to this thread, even though I wanted to post a few days ago.

 

[Leota]

OK, so the Holidays are interesting in this new body..... I've been working at decorating the tree for a week now. I get on about 5 ornaments at a time & then my arms give out. Any tips? I think the guys are going to have to help me finish it. I did decide not to do all the decorating I usually do. I kind of wish I hadn't started the tree, but you gotta have a tree, right?

My Dr. started me on Gabapentin for the RLS, leg cramp, neuropathy, spasms & insomnia part of the puzzle. I had gotten down to sleeping only about 3 hours a night & was dragging badly. The gabapentin is helping, but I think we'll have to throw in the Elavil because I'm still waking, just not wide awake - enough to stop the healing deep sleep. I was trying to do it as holistically as possible, but was having no luck.

Sending you all Pain Free & Good Day Vibes!

 

[tiggspring]

OK, so the Holidays are interesting in this new body..... I've been working at decorating the tree for a week now. I get on about 5 ornaments at a time & then my arms give out. Any tips? I think the guys are going to have to help me finish it. I did decide not to do all the decorating I usually do. I kind of wish I hadn't started the tree, but you gotta have a tree, right?

My Dr. started me on Gabapentin for the RLS, leg cramp, neuropathy, spasms & insomnia part of the puzzle. I had gotten down to sleeping only about 3 hours a night & was dragging badly. The gabapentin is helping, but I think we'll have to throw in the Elavil because I'm still waking, just not wide awake - enough to stop the healing deep sleep. I was trying to do it as holistically as possible, but was having no luck.

Sending you all Pain Free & Good Day Vibes!

Have you tried the suppliment meletonin? I take half of a 3mg dose sometimes full dose with milk and it helps both me and my DH. just make sure itdoesnt interact with any of your meds. Its the natural hormone your body makes to sleep so it it generally safe with drugs.

I'm all over the place. Getting lots done then wham so tired I'm almost comatosed. fall asleep in mid/late afternoon sitting up and cannot wake up. Glad my DD is almost 13 and other two are older too. I can take a nap now and not worry so much as long as I'm in the house they are ok to roam the house without me. Plus they have to shut off alarm system to go outside and it sounds off in my bedroom so I know they are going nowhere

will try to catch up more later...tired, tired and more tired

sending pain free vibes and pixie dust to all

 

[SeaSpray]

Hi everyone

I hope you are all doing ok. I've had a lot of pain-filled days recently. Weeks, actually. It has become my new "normal". Oh well. I keep telling myself that things could be worse, so I try not to dwell too much on being depressed about it.



Erika, how are you feeling these days????

OK, so the Holidays are interesting in this new body..... I've been working at decorating the tree for a week now. I get on about 5 ornaments at a time & then my arms give out. Any tips? I think the guys are going to have to help me finish it. I did decide not to do all the decorating I usually do. I kind of wish I hadn't started the tree, but you gotta have a tree, right?

My Dr. started me on Gabapentin for the RLS, leg cramp, neuropathy, spasms & insomnia part of the puzzle. I had gotten down to sleeping only about 3 hours a night & was dragging badly. The gabapentin is helping, but I think we'll have to throw in the Elavil because I'm still waking, just not wide awake - enough to stop the healing deep sleep. I was trying to do it as holistically as possible, but was having no luck.

Sending you all Pain Free & Good Day Vibes!

My DH was recently started on Gabapentin for diabetic neuropathy in his feet. He's been diabetic for several years now, but the neuropathy is fairly new. He sees a specialist in Boston. His next appointment is February 1st, and I will go with him. We'll ask about being a bit more aggressive with his treatment.

Leota, not getting decent sleep is one of the worst things, especially when you are in pain which good sleep would help. It's a vicious cycle. My DH also takes 5mg of Ambien every night. I take it too. We've been taking it nightly for a couple of years now, but on the weekends we try to skip it, and it has not negatively effected us, as far as we can tell. In other words, we're able to sleep, as long as we're tired enough, without it, on the weekends. We tried melatonin but it didn't seem to help either of us. But it's a good place to start. Just be sure to read up on it, because it works with your bodys' own rhythm, and so they suggest that you take it and go right to bed (darkness) so that your body can recognise the time to go to sleep, along with the melatonin. *Sorry if I'm not making sense, this is a low brain-function day for me*.

Have you tried the suppliment meletonin? I take half of a 3mg dose sometimes full dose with milk and it helps both me and my DH. just make sure itdoesnt interact with any of your meds. Its the natural hormone your body makes to sleep so it it generally safe with drugs.

I'm all over the place. Getting lots done then wham so tired I'm almost comatosed. fall asleep in mid/late afternoon sitting up and cannot wake up. Glad my DD is almost 13 and other two are older too. I can take a nap now and not worry so much as long as I'm in the house they are ok to roam the house without me. Plus they have to shut off alarm system to go outside and it sounds off in my bedroom so I know they are going nowhere

will try to catch up more later...tired, tired and more tired

Tigg, that happens to me all the time, too. I get up in the morning to go to work, sit at my desk all day (accounting), then I need a nap by the time I get home, just to be able to make/order dinner and stay awake for the evening. It feels like such a waste of time, all this sleeping, but it's beyond my control. I'm just really worried that once I'm laid off of work at the end of this month that I won't be getting out of the house early and will end up sleeping my days away. That's what mostly happens right now on the weekends. I'm going to have to make sure that doesn't happen.


I hope everyone has a good pain-free day!!

sending pain free vibes and pixie dust to all

 

[tiggspring]

Merry Christmas one and all!

Hope Santa filled your stocking with lots of energy

 

[EDuke98080]

Merry Christmas one and all!

Hope Santa filled your stocking with lots of energy

Merry Christmas to you as well! Hope everyone is doing ok after the busy time of year.

 

[tiggspring]

Happy New Year!

 

[tiggspring]

Roll Call


Well I finally feel a bit more stable. DH has been home most of the time since the thur before Christmas. Between holidays vacation and him putting his back out the past three days its seems he'll never leave! The good thing is it has given me 10 days of vaca with no scouts, lessons, school etc so it was PJ's , video games and 8 Harry Potter nights for us. Finally I felt a bit cought up rest wise. Him just being home means I dont have to drag all the kids everywhere which is a TREAT! The result is I'm down 6 lbs (ater gaining 7) and I have been exersizing more.

We got the kids a 360 with Kinect for Christmas and with my money I bought Disneyland and Kinect your shape. This added with Dance 3 and I have a prety comprehensive exersize playlist Now for those you considering getting the Kinect I should warn you and can be exhasting.

Disneyland it fun, very detailed veiw of the park although I do feel a bit silly at times. Not sure why, whats the differnece between this and Mario? Anyway Disneyland requires you to stand and use your outstretched arm as a way to push your way though the crowd. (everyone moves out of your way!) I find I have to switch arms often to keep from getting a sharp pain in my shoulder. Some of the rides require outstreted arms for flying, opening portals to space etc, sometimes you dance a bit (nothing fancy!) and occationally you jump, lean or duck. Nothing too hard but then for us just standing can be a job Anyway it is FUN and a good starting point. TIP kinect doesnt register your feet so if you have pain in your knees, cant jump or are too pooh sized to move like that just bending your knees is enough!

Dance 3 is GREAT FUN but exhasting. Again I dont move my feet much but it is a great way to burn calories fast 10min is my limit.

Finally Kinect shape is HARDER than wii fit. I have a hard time doing this for more than 10 min because the pace is hard for me. I'm enjoying Baliwood dance and try to do 50 cal a day. It does challenge me though.

I have been trying to do 10 min of shape then Dance then use Disney as a cooldown. Its been a week and so far so good.

Wonder if that makes up for the nap my body continues to force me to take from 9 til 12 or so? Still falling asleep sitting up!

Well thats my update for now.

Sending pain free vibes and pixie dust to all!

 

[tiggspring]

roll call


I'm all over the place. Dr visit and blood work were good weight down exersizing a few days a week BUT falling asleep everyday after kids go to school for 3 to 4 hrs

 

[EDuke98080]

Hi Tigg!

Will catch up soon!

Erika

 

[carrie6466]

Hi Everyone. Popping my head in for the first time in months. Cold, tired, whole house sick on and off since Dec. I think we've finally beat that, though! Still working on getting the Christmas decorations down. No one seems to care that they are still up, so I try not to let it bother me LOL. We did a lot yesterday. Today I just want to get dd off to school and go back to bed. UGH. Hope everyone's holidays went well

 

[yoopermom]

Hi, everyone, coming out of lurking to let you know that my DF62 (who was diagnosed with fibro maybe ten years ago, but has suffered with it probably twice that long) had to have emergency gallbladder surgery last week. He also has atrial fibrilation (sp?) that is usually controlled with medication, sleep apnea, and sinus issues. I continually advocated for him (since the first few days he was incoherent/delirious from fever), and I actually had the anesthesiologist say to me, "Thank you for telling me about the fibro, a lot of people don't mention it, and there ARE things I can do to make him more comfortable." He had some complications, and is recovering much slower than most patients would, but at least he IS recovering!

Terri

 

[tinkerbellandeeyor]

Hi everyone I was diagnosed at age 23

 

[tiggspring]

Welcome Newbies!!!


If you look under my posts I have posted quite a few things in the past about studies about fibromyalgia and web pages about the 60 symptoms etc. I would drag them all up now but frankly I'm quite tired and dealling with an infection so not up to searching myself. Everyone here is great and very understanding. Usually we answer pretty quick alothough it seems most of us have been in a slump for awhile now.

I'm still in a pain cycle so trying really hard to lose weight. Joined WISH here, not the compitition but general support thread. Down 30 bls from my peak and need to lose another 30+ to be where I was before my major crash of 2010. Finally taking my vitamins/suppliments like I should and tryong to use the xbox 5 days a week for 30 min. Mostly making 3 days but thats better than before. It's been a real mixed bag. Having good day, exersizing getting stuff done then day or two of completely passing out when kids go to school and sleeping til noon or later. Tried coffee and sitting on couch only to wake up not knowing how I fell asleep sitting up with tv and slept that way for hours! I'm still doing better than even a few months ago so I'll take it
Sending pain free vibes and pixie dust to all

 

[SeaSpray]

Hi everyone and to the newcomers. This is a great group of people, very welcoming and friendly.

Tigg, you are right; I have been in a major slump for the last few weeks too.

I got laid off of work on December 30th. I knew the lay off was coming, so it wasn't a shock, in fact it was a relief. The next week, I felt fantastic! I got so much done that next week, it was amazing. lol

However, ever since then, I've been in a lot of pain, and extremely fatigued. My plantar fasciitis has been very, very bad, I feel like I'm hobbling around worse than my mother did when was 80! I've been having to wear my sneakers and customer orthotics inside my house because of the pain.

Anyway.... enough about all that. I'm really most concerned with our Disney cruise in May. It's an 8-night cruise, from NYC to the Bahamas, including a day at Disney World in the middle of the cruise. I'm really doubtful that I'll be able to maintain stamina and not be in extreme pain during the trip. The only thing I think I can do is to lose weight, try and get my feet to not feel as if I'm walking over broken glass with each step, and probably will need to get a cortisone shot from the podiatrist right before the cruise. Blah.... How I wish that I could get up and not worry about the pain in each step. Fatigue is bad enough, but the pain when I do try to do something, makes me feel defeated before I even get going.

Ok.... once again...enough about all of THAT. I honestly do try to be optimistic and positive, but I guess I feel more comfortable typing all of this out here on this thread, because I know that all of you understand what I'm going through. Also, I'm glad for the relative measure of good health that I do have, so I try not to complain.

Tigg: The same thing happens to me! LOL I get up early with DH, and I make the bed so that I won't be tempted to crawl back in after he leaves. So..... I end up straightening up the house, throwing in laundry, make a cup of coffee, etc... and since the house is basically in good shape to begin with, all of that doesn't take long, so I end up in the family room.... on the recliner.... with my heating pad... and the laptop... and the tv on... Next thing I know, I wake up and it's several hours later!! lol Sadly, it has become a habit lately. I really hate it. I hope that I snap out of this soon.

tinkerbellandeeyor: I'm so sorry that you've had this from such a young age. It seems that young people are coming down with different diseases at a younger age with each generation.

yoopermom: I'm glad that your DF is recovering, although slowly. That does seem to be very common for those of us with fibromyalgia. It was good that you mentioned it to the doctors.

Pain-free Pixiedust for everyone!

 

[mommasita]

Hello. May I join?

I am 42, diagnosed a few years ago. I also have Syjrogens Syndrome, which has a LOT of the same symptoms as Fibro. I have 2 children almost 16, and almost 13. I also have a hubby who works completely insane hours.

I have tried numerous things over the years, and honestly NOTHING helps. NOw I just suck it up.

I've had 2 brain surgeries over the past 2 years, and one spinal for complications from a CSF leak after my last surgery. I have CHiair 1 malformation for life. (sorry if TMI)..

This month marks 3 years of disability for me, and I am HOPING to return shortly. I was feeling better, but that has dwindled with the winter and the COLD. I find I am at my worst with the changing of the seasons, so it is settling down a bit.

I get the results of my latest Brain MRI on Wednesday, and from there can ask for a gradual return to work. I only work 3 days per week, but the training will be 4 to 5 weeks FULL time, and my insurance does not see that going well, and work is insistant (and I understand the need).. I guess my fear is that an average day at home makes me exhausted, doubled with the migraines, and I find just keeping up the home: laundry, suppers, driving kids, etc overwhelming. They spoke about a rehab program to get me strong enough to endure 8 hour days.

sorry this is so long winded. I type most my feelings at night...

Sherrie

 

[tiggspring]

Hello. May I join?

I am 42, diagnosed a few years ago. I also have Syjrogens Syndrome, which has a LOT of the same symptoms as Fibro. I have 2 children almost 16, and almost 13. I also have a hubby who works completely insane hours.

I have tried numerous things over the years, and honestly NOTHING helps. NOw I just suck it up.

I've had 2 brain surgeries over the past 2 years, and one spinal for complications from a CSF leak after my last surgery. I have CHiair 1 malformation for life. (sorry if TMI)..

This month marks 3 years of disability for me, and I am HOPING to return shortly. I was feeling better, but that has dwindled with the winter and the COLD. I find I am at my worst with the changing of the seasons, so it is settling down a bit.

I get the results of my latest Brain MRI on Wednesday, and from there can ask for a gradual return to work. I only work 3 days per week, but the training will be 4 to 5 weeks FULL time, and my insurance does not see that going well, and work is insistant (and I understand the need).. I guess my fear is that an average day at home makes me exhausted, doubled with the migraines, and I find just keeping up the home: laundry, suppers, driving kids, etc overwhelming. They spoke about a rehab program to get me strong enough to endure 8 hour days.

sorry this is so long winded. I type most my feelings at night...

Sherrie

Welcome Sherrie

It sounds like you have been through alot! As far as working you will have to find out how a few others here manage as I havent worked since 1994 After all these years I still, at least twice a year try to plan or someway to go back "if I can just get ....done" or "feel better for..... " and "maybe working as a ..." If I'm honset with myself I know I am blessed to be as active as I am right now. I have hopes for a cure even thought the xmrv virus studies I was so excited about and even tried to get into seemed to have been a dead end. Still I hope.

I realize you may have to do this rehab for work or disabilty etc to get benifits and if thats the case I hope some of the folks here have some good advice for you. If however if its really about you needing to go back to work I will give you a suggestion, be very careful going back. Know your body and listen..I wish I did.Here is how my Fibro progressed its the best way I know how to explain it.

When I first got sick I was working at a Childrens Psychatric hospital and had been attacted by a patient. That was not unusual, however the shoulder injury and subsequent migraines that followed were. I did the 6 weeks out routine and returned to work. I contined to have problems headaches, pain then a scary symptom, inability to get words out ( aphasia). So I quit my part time nurses aid job. Then the symptoms got worse. So I quit graduate school for my msw for which I was on the wait list for acceptance but still taking classes to get ahead. Next I left my job at the hospital to work the day shift in community mental health. All the time telling myself years of the night shift was getting to me.
At my new job I had control of my schedule. Soon I found I was working shorter hours on monday/ Friday and racing through the rest of the week by sheer will. I continued to do well at work even winning awards for my work at both the hospital (milue therapist of the YEAR!)and service agency. However I was falling apart.

The result? The last seveal weeks of work I left several times a week with headaches etc. I had clients I had worked for for years at both sites who I couldnt remember their history. Finally I had a day where I could not figure out how to fill out a time sheet and found myself driving around a rotery for god knows how long not knowing how to get home. The next 2 years I was nearly always bedridding. Crawling to get from room to room when my husband was not there, sleeping 16- 20 hrs a day, a headache that lasted a year...yes not a day/minute without a headache, sufering from many of the 60 Fibro symtoms all at once. In/out of the er , couldnt shower alone ...etc etc. It was nearly seven years before I could drive again.

I am convinced that trying so hard to go back and stay at work is why I never recovered those first two years and why I have such a hard time balancing my disease now. But I had worked in the family resteraunt since I was six years old. Always had a paying job since I was sixteen (often two) and just didnt feel human not working. ....sometimes I still dont.

All of us have to find our path with this disease. Some can work, some cant. Some can go to WDW without a scooter and some cant. ( and some like me dont use it and crash for 6 months).

You wont find a better group of people to help you figure out how you need to work this. Sometimes I find just putting it out there and knowing there are others helps me know what to do.

Sorry so long

Pain free vibes and Pixie dust to all

 

[SeaSpray]

Hello. May I join?

I am 42, diagnosed a few years ago. I also have Syjrogens Syndrome, which has a LOT of the same symptoms as Fibro. I have 2 children almost 16, and almost 13. I also have a hubby who works completely insane hours.

I have tried numerous things over the years, and honestly NOTHING helps. NOw I just suck it up.

I've had 2 brain surgeries over the past 2 years, and one spinal for complications from a CSF leak after my last surgery. I have CHiair 1 malformation for life. (sorry if TMI)..

This month marks 3 years of disability for me, and I am HOPING to return shortly. I was feeling better, but that has dwindled with the winter and the COLD. I find I am at my worst with the changing of the seasons, so it is settling down a bit.

I get the results of my latest Brain MRI on Wednesday, and from there can ask for a gradual return to work. I only work 3 days per week, but the training will be 4 to 5 weeks FULL time, and my insurance does not see that going well, and work is insistant (and I understand the need).. I guess my fear is that an average day at home makes me exhausted, doubled with the migraines, and I find just keeping up the home: laundry, suppers, driving kids, etc overwhelming. They spoke about a rehab program to get me strong enough to endure 8 hour days.

sorry this is so long winded. I type most my feelings at night...

Sherrie

Welcome Sherrie

I'm so sorry to hear about your health problems. You've really been through a lot.

Nothing really helps my fibromyalgia symptoms. I take Lyrica, and I don't know whether it does any good or not because I don't know if I would feel worse without it. I don't have any negative side effects, so I continue to take it just in case it is helping a bit.

I just got laid off from work a month ago. It was a job that I loved in the accounting department of a finance company, but a year ago it was discovered that the owners were running a Ponzi scheme so the SEC and the state of Massachusetts threw the owners out and and until a month ago I was working for the state-appointed trustee. It was a very stressful period and it really wreaked havoc on my health.

Some days I went to work in a total fog but because I knew my job so well I was able to get through and still be accurate and get everything done each day. Oh, for the last year I was only person left in the accounting department because every one else was laid off a year ago.

Anyway, at this point I am collecting unemployment and I'm looking for work, but I know that it would be extremely difficult to walk in to a new situation.

I can understand your concerns about returning to work; I feel the same way, thinking that if I can't even get through a day at home in a normal way, how could I go and learn a new job.

Stress is a very big factor in fibromyalgia. Even "good stress" such as a vacation can effect you negatively. Many of us can get through a vacation by adrenaline and the excitement of it, only to come home and "crash" and have our symptoms go haywire. It's like we do something and then have to recover from it, even something like a vacation, or when I go out of state to visit family. Blah. This is no way to live. But then again, I think of my sister who has suffered with disease all of her life (asthma, cancer, Graves disease, brain tumor, should replacement surgery, etc etc), and how she remains positive despite all of that, and then I feel grateful that I "only" have fibromyalgia. I try to think about the good things, but sometimes it's very upsetting to feel young mentally but feel so old physically.

I think I'm rambling now... LOL

Welcome Sherrie

It sounds like you have been through alot! As far as working you will have to find out how a few others here manage as I havent worked since 1994 After all these years I still, at least twice a year try to plan or someway to go back "if I can just get ....done" or "feel better for..... " and "maybe working as a ..." If I'm honset with myself I know I am blessed to be as active as I am right now. I have hopes for a cure even thought the xmrv virus studies I was so excited about and even tried to get into seemed to have been a dead end. Still I hope.

I realize you may have to do this rehab for work or disabilty etc to get benifits and if thats the case I hope some of the folks here have some good advice for you. If however if its really about you needing to go back to work I will give you a suggestion, be very careful going back. Know your body and listen..I wish I did.Here is how my Fibro progressed its the best way I know how to explain it.

When I first got sick I was working at a Childrens Psychatric hospital and had been attacted by a patient. That was not unusual, however the shoulder injury and subsequent migraines that followed were. I did the 6 weeks out routine and returned to work. I contined to have problems headaches, pain then a scary symptom, inability to get words out ( aphasia). So I quit my part time nurses aid job. Then the symptoms got worse. So I quit graduate school for my msw for which I was on the wait list for acceptance but still taking classes to get ahead. Next I left my job at the hospital to work the day shift in community mental health. All the time telling myself years of the night shift was getting to me.
At my new job I had control of my schedule. Soon I found I was working shorter hours on monday/ Friday and racing through the rest of the week by sheer will. I continued to do well at work even winning awards for my work at both the hospital (milue therapist of the YEAR!)and service agency. However I was falling apart.

The result? The last seveal weeks of work I left several times a week with headaches etc. I had clients I had worked for for years at both sites who I couldnt remember their history. Finally I had a day where I could not figure out how to fill out a time sheet and found myself driving around a rotery for god knows how long not knowing how to get home. The next 2 years I was nearly always bedridding. Crawling to get from room to room when my husband was not there, sleeping 16- 20 hrs a day, a headache that lasted a year...yes not a day/minute without a headache, sufering from many of the 60 Fibro symtoms all at once. In/out of the er , couldnt shower alone ...etc etc. It was nearly seven years before I could drive again.

I am convinced that trying so hard to go back and stay at work is why I never recovered those first two years and why I have such a hard time balancing my disease now. But I had worked in the family resteraunt since I was six years old. Always had a paying job since I was sixteen (often two) and just didnt feel human not working. ....sometimes I still dont.

All of us have to find our path with this disease. Some can work, some cant. Some can go to WDW without a scooter and some cant. ( and some like me dont use it and crash for 6 months).

You wont find a better group of people to help you figure out how you need to work this. Sometimes I find just putting it out there and knowing there are others helps me know what to do.

Sorry so long

Pain free vibes and Pixie dust to all

Tigg, I don't think that I ever knew your history.

 

[tiggspring]

Tigg, I don't think that I ever knew your history. [/QUOTE]


Wow realy? I thought I blabbed it so many times here on the Dis that people were sick of me Let me catch you up on the rest.

Well there is one really miraculous part of the story. After two years of this unending hell, My infectious disease specialist (aka fibro specialist) had a chat about how she had seen very little work with FMS. How physical therapy usually failed because it was based on progressivly improving and FMS varies and downright rebels when you force it to progress. She always told me on good days do half of what you think you can do or your body will get back at you. As evident by my non wdw scooter days I always listen to that advice She and her colleges across the country also saw little effect from drugs and some bad side effects like addiction/dependance. So she was causious with the meds. One at a time tiraiting up slowly and never expecting them to work as they did on normal patients. SO whats the miricle? My kids and for two big reasons.

In my first marrige My DH1 and I had to make a sad decsion when he developed Hodgkins disease. No kids. He was adopted and we had no history to determine if his disease ran in the family. So at 19 while planning a wedding we thought would be after graduation, we decided no kids We got married. I went back to school. He got past his five year all clear check up when we were both 24 and we decided to put cancer behind us dropping out of a support group we had been with for 5 years. Now we would show up for the parties we thought. 6 weeks later he was gone. Developed leukemia from the meds he had taken before. Life support for 21 days, transplant lists ....it was a nightmare.

Then I met DH2. He was WONDERFUL to work with and very gentle about my widowhood since he watched his mother sufffer through it since he was 4. I asked him one day if I should stop talking about Kenny. His responce " any man not strong enough to handle you talking about him or knowing how much you loved him isnt man enough for you. I wouldnt want you to forget me if we were married" WOW I should have know I would marry him then

So we got married and at 27 and 29 wanted kids a year or two into our marraige. Well six months in whamm fibro took eveything..except James. 2yrs later ,13 drs, 2 years of tests and nearly completely bedridd my Dr told me two things. I needed to decide when I was going to stop searching for something she had never seen happen and have kids If I wanted them. "you dont want to be in your 40's looking at a potential cure but unable to have babies. You will always find a way to care for them and most of my patients go into a partial if not full remission"

Well after a little research and visiting an High risk OB specialist it was a go. We got pregnant the first try and I went into remission!!! About 80pct anyway. I loved being pregnant dispite the morning sickness every 2 hrs up til delivery With each pregnancy I went into remission and watched my FMS come back in 6 month like a freight train comming at you that you cant stop. THere was a huge benifit though. I watched my syptoms come back without fear of dying from the chest pain, dizzy spells etc. I got to know how they progressed and how to manage them a little at a time.

It was after my son was born that I finally began driving. I knew when I was about to get a migraine and what visual coplications might be comming and that I had to be home in aprox 15 min. I could drive! It was two miricles in one. I had the babies I always wanted and they gave me a slice of my life back and a reason to go on

We have three cord bloods stored up in MA. Who knows that my cure me too. Although we set them up in case the kids had a blood disease when they were young it is amazing the work being done on stem cells.

So now you now my story...