Fibromyalgia Community

Hello Bette....MiMi in NC....good poll....but I have to tell you that *stress* should have probably been one of the choices and fatigue as well.

For me....I have learned how to *control my pain*....the lack of sleep is a trigger for me...but the fatigue and stress as my 2 worse things that I have to deal with.

I use to worry about lots of things with the wrath of the dragon, aka FM....but figured out that it is just NOT WORTH the effort to do so anymore.

I am dealing with lower back issues right now but they have gotten better. I am having to use heating pad often....and of course the Stopain Spray....if you have not tried it...you might do so...as it is good stuff to use as needed.

Take care and good luck.


MiMi

Hi

I cannot say enough about lidocaine shots. I have suffered with numbness in my fingers for years with no answers. Then I
had some extreme pain in my mid back that took me to the Dr. she looked at the tightness in the back and neck and gave me the shots. I was so tight it was hard the first time to choose which points to work on.

She then said wait a week and see the chiro the next week come back a week after that and come back for the shots. After two sets of shots the numbness is gone. The DDD is still there and so is the osteoarthritis in the neck so I using Pilate's and Yoga to work on that.

If I need it again I will do it. Would never have believed it could help this much.

lauab

MiMi, are you able to rest when you have to? I guess I'm "lucky" to have been on disability for the past 15 years. If I have a bad day, I stay in bed and read.

The house is always a mess. I don't vacuum. My husband does the floors only--about once a week. MiMi we live on a farm; there are some pretty nasty things tracked in on boots.
We have some very old cobwebs in our corners.

I also miss my job. I taught handicapped adults at sheltered workshops and continuing day (psychiatric) centers. It was wonderful. No, there were no discipline problems, no tantrums. At the faintest hint of trouble, I got a trained professional to step in. We prevented outbursts and had a calm classroom. In 12 years, I never had a student earn a GED diploma. I did have students learn to write their name and address, sign their workshop paychecks, or learn the value of the coins in their pockets. No one can measure those gains on a standardized test, but I know my students' lives were enriched.

That's why I included the last choice in my survey. As to fatigue, it's from lack of good quality sleep. No matter how many hours you spend in bed, you need deep, uninterrupted sleep to heal your body. We don't get it, so we wake up with that Mack Truck (as in run over by one) Feeling.

BetteK

Hello BetteK, I have good nights and bad nights...in the beginning I had major sleep issues and a lot of stress....it has gotten better for the most part.

I will tell you this that I have been sleeping in a recliner since 2005....but not by choice. I had so many more pain issues trying to sleep in bed. I woke up every 4 hours or so and could not get back to sleep. I felt like I was 90 years old...when I tried to get up in the mornings...I had cervical (neck) surgery and elbow surgery and several hand surgeries. I had to stay upright during the recovery of each of these. This is when I found out just how much less body pain, especially on my back. I also had breathing when lying down in bed.

I now have pillows under me in my Catnapper recliner...it is a very large one...I think this is why I no longer have the back pain.

I miss my job also. I worked for a loan servicing company for over 14 years....doing computer work...I paid taxes and insurance and also worked a while in the cashiering department posting payments and balancing out work. I was a numbers person. I generated millions of dollars out each month and had to balance it all. I did a lot of research work as well.

I was laid off 2 days after I had my left hand surgery. I had filed my 2nd workers compensation claim and the company did not want me doing this. I ended up with not getting my disability benefits and the company also denied my workers comp claim as well. I eventually had to apply for disability and was denied this in the beginning as well....so I was use to having a job with a salary and then had all sorts of health issues and could no longer work so I had no money.....my stress level was high, to say the very least...which was not good for my mind or my body.

I have learned how to pace, pace and pace even more on the things that I can do these days...and the rest of it...I try not to worry about. I use to be able to do it all...inside and outside my house and yard. That is no longer possible. I think we all must come to terms with the wrath of the dragon and what it does to us and our lives as well.

I have found out though that I must *get up and about*....no matter how tired I am or how bad I hurt...as IF I don't....I make things even worse.

I drink lots of water each day and take my vitamins and supplements...I watch what I eat and I try to do gentle exercises and/or stretches each day...I use my heating pad as needed and stopain spray on the pain that will not ease up...I have learned how to cope...my life is very different from what it use to be.

I have 3 grandchildren....2 of which I see often...1 of them I have not seen in over 3 years...(long story there and a large part of my stress)..I love my grandchildren though as much as I love my children...I have 2 boys and a girl in the middle. Each of them have 1 child. My older son is divorced...and has been through a living hell in the past few years.

The fatigue I have is not always the same which I do not understand....some days are worse than others...and I have no idea why. The doctor told me that there is nothing that will help chronic fatigue...but I have problems thinking this is correct...so I continue to try to find something that might work.

Take care and good luck.


MiMi

MiMi, they strung me along as long as legally allowed before I got my SSDI. It turned to reg ss when I turned 65. SS gives you medicare which is a big help. I'm on my husband's policy but only as long as he lives. Then I'll have to pay for supplimental ins. And we with fibro NEED medical ins.

Have you tried an adjustable air bed like sleep number? I bought mine the day I got my SSDI approval. I have it just hard enough so my hips don't touch the bottom. It supports your whole body with the bed shaping to you--even when you roll over. But you're not the only one who sleeps in a recliner. My son's girlfriend does too for her back.

BetteK

I have also realized just recently that sleeping in the recliner or even on the couch is better than my bed. I have been having a horrible flare up for about 3 weeks now and am miserable. I dont know what to do anymore to try and make it better. The pain is making me depressed and I actually stayed in my bed for 3 days sleeping. I was diagnosed with fibro. about 10 years ago and I have had flare ups before, but not ever this severe. On my good days I keep active. I have a 4 year old and a 14 month old along with a 13 year old child. I work full time also. I feel like my pain is getting worse. Any advice would be greatly appreciated.

Hello mybdy and welcome....MiMi in NC....has your doctor checked your Vitamin D level? If not, then you might want to speak to the doctor about doing so. Low Vitamin D can make a difference for a lot of people these days...as with anything and everything related to the wrath of the dragon, aka FM, it does take time.

Staying in bed or even in one place is not a good thing for most people....it is better to get up and about as much as possible, even if you are not feeling the best...have you tried using a heating pad or taking a hot shower? You should also try Stopain Spray (walmart)...on places which will not ease up. It is good stuff.

I hope you will check out the info under *tips* and *resources*...as I am sure you will find something that perhaps you have not thought of trying.

There is something out there that will help you cope better, you just have to find the right combination of tools that will work for you.

Hang in there and take care.


MiMi

Are you taking warm showers or baths 2 X a day? I know how hard it is to get up for anything more than quick trips to the bathroom, but the warm water does help. (This is from the lady who once spent 6 weeks in bed.)

When you are in a flare that bad, you should call your doctor's office and wheedle yourself in ASAP. The turnaround for me was when I did just that. I called the office and told my friendly receptionist how the doc should really see me on a day when I could not cope. She worked me in as the first patient the next day. I was also the last patient of that day with 2 CT scans, an MRI, and blood tests before and after lunch in between.

I left the office with a new understanding between the doc and me. He had called my pharmacy and explained tht he did not carry around his triplicate Rx forms, but would mail a script to the pharmacy that evening. In the meantime, would the pharmacy give me 6 days worth of Duragesic patches? They were waiting for me at the drive-up on my way home.

That doc has unfortunately left the area, but from that day to this--about 18 years--all my docs have believed me when I said I was in a flare. I am now off the heavy duty stuff, but have anything I need right here at home for an "as needed" useage.

If you aren't on a friendly, first name basis with your doc's receptionist, do whatever it takes to get there. This is the gatekeeper to your care. If you do not abuse this relationship, it will help you when you really have to see the doc.

In the meantime, baby yourself, and don't overdo when you start to feel better. Ease into normal activities.

Towards days without flares,

BetteK

MiMi, you have the best tips. Hope the Dragon is calm for you.

Have you ever had nerve blocks? I get them every 3 months if I'm lucky and less often if the doc's schedule doesn't permit.
I swear the things have a 90 day warranty. Right now, I'm 2 months into my Dec 3 blocks. The normally ever-present pain in my spine at waist level is down to a 3 out of 10 and might just stay about there until 7 A.M. on March 4 when I get the next ones.

They hurt like blazes, and it is kind of scary getting drugs pumped into your dorsal root ganglii, but they are what keeps me mostly vertical.

One more tool in the big bag of tricks against the enemy--PAIN.

BetteK

Hi MiMi,
I haven't had my Vitamin D level checked in maybe over a year now. I had it checked when I was pregnant with my son and it was low. I was taking the 50,000 once a week. I do still take vitamin D supplements, maybe not enough. My heating pad is currently my best friend. I have not heard of the Stopain Spray, I will have to try it. I have to admit that even with being diagnosed for 10 years, I havent done a whole lot of research about it. When I first started to notice my symptoms, my Dr. at the time actually told me to my face that "it was all in my head, and caused from too much stress" My Dr. now is awesome though! She is the one who diagnosed me. Thank you for those tips and resources. I need to try out different things and see what works.

BetteK, thank you so much. Both of you ladies are very encouraging and helpful. My Dr. is really good at listening and talking with me about my symptoms and she will pretty much order whatever we think will help. I am however, really bad about calling my dr. when I need to. This is the worst flare I have ever had in 10 years and it has been almost for 3 weeks now and I have not called her about it. I feel like with the other flares I had, this will eventually run its course and end but this time is different. My husband just actually lectured me this morning about that! LOL He is very supportive and is worried about me since this is the most down he has ever seen me. I just dont want my dr. to think I am trying to get pain meds. or think I am overreacting. Even though deep down I know she really wont think that. I guess I am just hoping it will soon be over.

Mybody, your friendly, sympathetic doctor has seen you on your regularly scheduled appointments. I'm willing to bet that you were neat and clean and wearing clothing that was becoming to you. If you wear makeup, it was applied carefully.

In the middle of a really bad flare, you will probably choose to wear your most comfortable clothes. You'll be clean and neat but you will not have fussed with your hair. (If you're like me, you'll wear a camisole because bras hurt too much then have to wear clothes that do not cling.) You will not have slept well for several nights and will be very tired and very sore.

Your doc, being a trained observer who also cares about you, will notice all of this. The contrast between you in your normal, baseline pain level and you in this major flare state will be obvious. It will be a valuable assessment tool for her.

How can you expect your doctor to understand the full impact of your illness if she has never experienced it? She cannot help you if she doesn't know you need help. There may also be some other condition in play that is new or wasn't obvious in your less critical state.

There may be a treatment that she hadn't considered before, but now realizes you need. She may order more extensive testing--as my doc did.

In other words, your doc needs a complete picture. Give it to her.

Towards better days,

BetteK