Fibromyalgia Support Group

Hi everyone! Im new and I was diagnosed with fibromyalgia. Last November actually., I still work full time ans have. A wonderful husband and two year old son. I also have degenerative disc, with two lumbar discs completely gone and a conjoined nerve root. I still wrk full time, but there are days. More often than not, that it takes everything in me to function. I've learned recently that I am opiate intolerance. And savella seems to be all that wrks on the fibromyalgia. Im taking dilaudid and parafon fort. Does anyone have any advice for me? Im so miserable, and often think abt how dead is better . I just wish sometimes God would just take me. Please help

Welcome, gunnersmom! You are very strong to work FT and take care of a family with FMS and degenerated discs! At least you found the Savella to work. Sorry to hear that you're opioid intolerant-FMS sufferers often develop intolerances to medications, though, so you have to keep trying til you find what works for you. Have you tried (gentle) PT? I don't know how that would work, though, given your back situation. Also, given your level of depression expressed above, counseling with a therapist might not be a bad idea. Sometimes just having someone to LISTEN helps. And, of course, now you have us...so look around the forums and posts. Hopefully, you'll find information you can use, things that will make you nod in recognition, and even maybe a post that will make you laugh! I was extremely happy to find this support group and am very glad to be a member!

-gentle hugs-

TeaButterfly

Post edited by: TeaButterfly, at: 07/20/2012 07:02 AM

Hello, gunnersmom, I'm glad you came here to talk about your illnesses and your feelings about them. These sad feelings of being tired of the difficulties, the pain, trying to get through a work day, etc ... It all boils down to two things. First the feelings are valid. All that you are going through is a DAILY challenge. There are other people here like you, and I am one, who got saddled with more than just fibro. That is rough, as you know. And you are doing this while working and raising a two year old. ( the two year old will slow down?) The second thing is that we have developed another illness: depression. Just like our fibro, our backs, our feet, HA's, whatever, it deserves attention, and the same thorough search for solutions. We probably don't educate ourselves enough about that ilness. Either professional help with therapy, or sharing our struggles here and/ or at other sites will help.

It's such a relief for us to come here and see that 9 out of 10 people have this symptom like me. 5 of ten have this, like me. Well maybe we would be helped to say we realize our depression is common and normal, and share the small ways that we are dealing with it.

It's one of the awkward things we don't share much, in our "off-forum" world. But we share those feelings here, and sometimes go hang out on other forums at MDJUNCTION or elsewhere, that are for mood disorders -- Use however many resources it requires to get you through. If a person searches for four opinions on a back problem, and spends how many hours? -- making appointments, driving there and back, dealing with differing opinions, researching our illness, well then it's not a leap to consider that this problem is going to require effort, too.

We need to figure out for ourselves: What are the triggers in life for the worst flares of sadness? What are medical/ prescriptive possibilities, what are some nutritional aids, and then there is that depression aid that can be most difficult to follow-up on, exercise. It has many benefits, so what exercise is practical for you, what can your family do to help you get there, consistently. They would certainly want you to thrive.

We can remind ourselves to know and believe that this one, depression, could wax and wane. Maybe you've seen that that is true. I have to remind myself that it has lifted before.

it's possible that you may find it is really intractable, and so interwoven with your pain and fatigue that you'll need to see one day about possibly cutting back on the work schedule. And on another future day, you may need to stop work altogether. None of us wants to be non- productive, as far as having a career, working can actually alleviate things like isolation, but one day that decision was made for us, when the scales tipped.

So welcome aboard, you are not alone in this. We try to do cheery things, to egg ourselves on with questions in threads like "what did I do for myself today?". These are things you can incorporate into a life over time, so that all of the illness, and pain and responsibilities that you are bearing don't swallow you. I'll sure let you know what I did when I figure it all out, lol, but just as likely, you will come up with small steps to help me or someone else. Let's just keep hanging on.

I know none of this is easy, and I hope I don't sound glib. I sincerely hope we can all continue to help each other, you included.

Ah you poor thing! I want to say something and really say it forcefully. Dying, or taking your own life, is not the answer. I found a fiance after he suicided, and believe me, from a survivor of suicide, that it doesn't make it better. And the questions, and grief and everything that your family will go thru... you don't want to put them thru that. You especially don't want to do that to your son. He would grow up wondering why you did it, and he would blame himself, he was too young to help, didn't you love him enough to stay with him.

It's not worth it.

I don't know much about Savalla, but for some of the medications we take, suicidal ideation is a very serious possible side effect. You should speak to your doctor IMMEDIATELY about either changing meds, if it's the Savalla, or adding an anti-depressant to your medication regime.

Fibromyalgia affects the chemical balance in the brain. This is why we feel pain even when there's no reason (like a bruise or broken bone)for the pain. It also screws up our sleeping (with brief bursts of brain activity while sleeping, we don't get to stage 3 & 4 deep sleep where the body rests and repairs itself). It also can cause depression, anxiety and panic attacks. This stupid condition really does a number on us!

You need to speak with your doctor immediately about the depression and suicidal thoughts. Please, believe me, it's the pain, the condition, and the meds. Don't do it. PM me anytime you need to talk, I spend most of the day on the computer.

Now, yes, you're definitely come to the right place. This is a very active website and there's all kinds of great information here. Browse around, jump into any conversation you're comfortable with. Ask questions, rant, rave, cry, laugh... we're a great big family, and now you're part of it. Other "normal" people don't get this disease. We like to say here, "we get it cause we got it." WE, will understand everything you say, we can relate, we've all got Fibro, and you can come here anytime to find a shoulder, an ear, or some advice.

(((hugs))) we also give a lot of hugs.

Welcome to our group!

I have degenerative joint in my left hip, so I'm familiar with some of the pain you're having, not only with the fibro but with the DDD. For fibro, some suggestions for relief... 1) get enough sleep, this helps with the pain, the fog, and the depression. If you can't sleep well enough, talk to your doctor about a sleep study to find out if you have Restless Leg Syndrome (it's common with Fibro) or sleep apnea. Both of which can be treated. You may also just need something like a muscle relaxer to help you get to sleep and stay asleep. 2) hot bathes with epsom salts help some of us with the muscle pain. 3) if you have localized pain, your heating pad is your friend. Also things like icy hot, bengay, capsasin creams, or thermacare patches, or salon pas patches can help for spot pain, like I imagine your back.

Other than Savalla, do you take anything else? Non-steroidal anti-inflammatory drugs are of limited use with Fibro, but you have the disks in your back, which IS inflammation, so you probably need to be on an Nsaid, either over the counter like Aleve or Motrin, or a prescription one like indomethacin.

Slow, gentle stretchs to get the muscles to quit cramping up might be helpful, but just remember, SLOW. We fibromites can do almost anything we want to... we just have to break it into smaller tasks and go at it slower. It's like the old saying, "How do you eat an entire elephant? One bite at a time."

Don't try to be super mom. Your body can't handle it anymore. After a hard day at work, let the hubs deal with the son or cook supper. He's got to step up to the plate and help more than he used to before you got sick. That's probably one of the hardest things for us to do... SLOW DOWN. DO NOT FEEL GUILTY ABOUT IT EITHER. You didn't ask to get sick, I'm sure you didn't plan it. You wouldn't feel guilty if it was cancer, or something like that... In a way, this is similar. While it won't kill you (tho it often feels that way!) having Fibro, this chronic pain condition, is a lot like getting a diagnosis of cancer or diabetes. It's lifelong. It will have better days, and worse days, and average days. But there's never going to be another day, you don't think about it.

When we get a diagnosis like this, of Fibro, we start greiving. We have to say goodbye to the person we used to be, the super mom, the go-getter, the worker (at whatever your job is). We just aren't her anymore. The stages of grieving are: Denial, Anger, Bargaining, Depression, Acceptance.

It sounds like you're firmly entrenched in the Depression. Understand, what you feel is NORMAL. Any normal person would feel the way you do. And with your doctor's help (to change meds or add or something to help with the depression) and with our support and advice and just sometimes having someone listen who really understands what you're saying... You'll move to acceptance.

You can live with fibro, and have a good life, and enjoy getting to see your son grow, and give you grandchildren one day. You need help with the depression, and you may need to try some new meds for your symptoms. Fibro affects everyone differently, and everyone reacts to meds differently. Sometimes it takes a while and a lot of trial and error to find your unique "cocktail" of meds that help your symptoms. Your cocktail will be different from mine, we're all on different combinations of meds. It can take a while. But you'll get there, and we will help!

Welcome to your new family!

Hey there gunnersmom...welcome to the family. and we are family here, I've been here since Feb and I know that the people here will comfort and empathize with my struggles. Before I felt alone and defeated, now I feel like I've got a whole town full of fellow fibromites to lean on...and more than one of us has a hard time at once...but more than one of us is probably having an okay day too so there is always someone to help.

Don't give up...we know how hard it can be to keep going.

HUGS

Dana

I want to thank all of you. Let me rephrase something though. I am not suicidal, nor do I believe in it. All I was trying to say was I sometimes wish that God on his own free will would take me out of all the pain. Im really glad that you guys took the time out of your days. To respond. That's awesome of you. I just hope I can be here for all of u when I'm needed.

Whew! You had me worried there for a while!

Yes, we're always here for each other! And now for you too!

Hi, gunnersmom, Cymbalta helps me a lot; also talk therapy, meditation, some yoga/tai chi. Can you take epsom salt baths? Microfiber sheets are better, IMO, than cotton for sleeping/smoothness. Also a featherbed on top of your mattress. Water therapy?

Hi! Thank u for your suggestions. I live in a rural area so warm water therapy is almost. 60 miles one way. I was on cymbalta when I first found out and it made. No difference. I have also tried therapy but the therapist stopped it because she was killing me. Due to my back and hips. Yoga ain't gonna happen. Never tried the sheets, or the Epsom salt. Ythank you!

Hi honey. Warm welcome to the group:

Wow, between your demanding job and your family you really have your hands full. I am so sorry that you have to deal with health issues as well. I can't handle therapy, massages or tens macines either. Please start by trying the Epsom salt baths. It can give a little relief and is cheap and easy.

The board can sometimes get a little quiet over the weekends but there is usually a few of us lurking around.

Please make yourself at home and jump in anywhere, anytime.

Gentle hugs.

Faerie