HealingWell
Search Close Search
☰

Am very scared and in a bad place after talking to a friend. NEED some reassurance

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/13/2015 2:38 AM (GMT 0)
A friend I was talking with asked me about my med issues--so I said GI and fibro (they think--tho a diff. doc thinks it's myofascial). So he says the following:

"My X suffers from it and lives with me cause the nerve damage is extensive. She stopped working about a year ago and couldn't work anymore , shes on disability but of course its not enough and I wasn't going to let the mother of my children or anyone I know go into a home that would treat them like crap "

I told him how terrible that was and is that what I get to look forward to. He said well it probably affects ppl differently. I mentioned what had started mine--"bone" pain; got on med then pricklies.
So then he says " thats what my x just said . At 32 she said the pain level was at a 2 and now its more intense"

So I'm scared to death. My mom recently died--she had diabetes, bad nerve issues, crippling weakness, and more.

So I think of myself, barely able to move, on disabilty, or in a home, in my THIRTIES, not able to do anything.
Please PLEASE tell me this is a rare case. I am not and will not go through that. I already can't do very much due to GI issues. My pain is not bad now on 20 mg Gabapentin--a bit of neuro pricklies sometimes. All I picture is this getting worse and worse and worse.

I really need reassurance. I've had anxiety since I was a kid--tho I think I'm over the major depression and panic I had then too. I sat in my car after our talk and just bawled.

Post Edited By Moderator (Sherrine) : 7/12/2015 11:40:09 PM (GMT-6)

Posted 7/13/2015 3:48 AM (GMT 0)
Dear phixgrrl
Take a deep breathe, into diaphragm. Hold for few seconds. Slowly let it rise from belly out nose. Repeat until this feels like your normal breath pattern. Close eyes. Sit comfortably. Start with toes. Imagine them sinking into carpet, relaxing all parts. Breathing, move to ankles. Slowly continue up legs to belly, pelvis area lower back, upper stomach and breast area. Breathing in fluffy clouds od complete relaxation, go to shoulders. Feel them lower. Neck becomes like butter no weight of head. Last, feel your face droop, loosen lines by eyes, jaw and forehead. Last, breathing in and out, feel the top of your head blend into perfect weightless nothingness.
Remain in this state for at least five minutes. Mind is blank of all thoughts. A thought arises, watch it go, repeat. Slowly open eyes and while in this calm and aware state remember that you are safe.
What you heard was a story of one persons path, in this moment. It is not your story.
Repeat excercise as often as needed. This relaxation can be done anywhere anytime. Pull your car over, go to restroom and practice it. Close your eyes while waiting for dr. It can be five minutes or thirty. But with true diaphragm breathing you can always relax. You can be focused and alert while calm and fluffy.
There will always be stories that can scare us and create anxiety. We are our own, created mindfully, story.
Blessings
Posted 7/13/2015 3:51 AM (GMT 0)
First of all, fibro is not a progressive disease. There isn't any actual damage to nerves or muscles from the fibromyalgia itself. Doctors believe that there is an issue with the way the brain PROCESSES pain, not actual damage. I've been dealing with it for about 15 years and I live a mostly "normal" life. Many of us have had to make adaptations (maybe working at a desk as opposed to being on your feet all day), but most of us get to a point that we have full meaningful lives. It just sometimes takes a little creativity.

I have never heard of anyone being placed in a nursing home for fibromyalgia. If it has happened, it would be very rare, and I wouldn't be surprised if there were other health conditions involved. Also weird nerve sensations are pretty common with fibro. I get pricklies too, and I'm not on any meds for fibro. Others get hot/cold sensations, itching, burning, etc., and as far as I know, these sensations are harmless.

Millions of people deal with chronic illness/pain and are able to be self sufficient. Here is a good article from the National Institute of Health. There are sections that discuss fibro progression (or lack thereof) and job accodomations:

http://www.niams.nih.gov/health_info/fibromyalgia/#f

Take a deep breath. Your fibro may wax and wane. You will feel better some days than others. You may have flares. But plenty of people with fibro work, raise families, get married, go to school, go on vacation, garden, clean their homes, do laundry, etc. Most of us live normal lives. Like I said, we just sometimes have to slow down a bit, get creative, or make some accomodations.

Keep moving, exercise when you can, try to eat well, try to get enough sleep. See your doctor when you need to and continue to take your meds if they seem to help. If they stop helping, there are tons of other things to try from accupunture, to meditation, to massage, to OTC meds, etc. What works for one doesn't necessarily work for another, but there are many many things to try.

Hang in there. You sound like you are doing fairly well with your fibro and there is no reason at all to believe that you won't continue to do so.

Hugs - Austen
Posted 7/13/2015 3:51 AM (GMT 0)
Hi phixxgirl. I'm sorry you're feeling so anxious right now. I only have a few years experience with fibromyalgia but so far I still work full time and lead a very active lifestyle. I can totally understand your concern because I've had the same fears and still get down or fearful when I'm going through a flare up and it can be overwhelming. not everyone here is still able to work and some of them are able to go back to work after some time off. What I can tell you is that we have many members on here that have been diagnosed for many many years and I'm sure they'll be along to let you know that they still lead full productive lives. Usually when someone gets completely down with this condition it seems they also have other things going on with the fibro too.

Your friends wife may have other things like that as well.. eventually you will find the right balance that works for you and enables you to manage your fibro effectively, whether its medication, or over the counter meds, physical therapy, exercise or a combination of all of those things. In the mrantime you've got a lot of people to come here for support and encouragement. Always remember that none of us experience this disease the same wsy. Take care and hugs to you.
Posted 7/13/2015 4:55 AM (GMT 0)
Hello Austenfan
I love the link you provided! How I never found this in my research during the 15 yrs. of my fibro is interesting. So happy to have it! Thank you. I bookmarked it. Would you consider posting it to all here? Just the amount of organizations listed is so helpful, let alone research and clear, concise answers.
Blessings
Posted 7/13/2015 5:09 AM (GMT 0)
Oh god bless you. Thanks so much. I really need to hear this.
My therapist knows a woman who was wheelchair bound thanks to fibro (which is also very scary) and started doing yoga and walks just fine now! However I dont' know anything else about her.
And no I dont know anything else about my friend's ex.

As for my background, I workout 5x/week--have been for many years. I do acupuncture 1/week-except last week where I had to cancel due to my supposed IBS. Ive only been doing that for maybe 4 weeks. I do hydrotherapy, which is also relatively new. And I get chiro for my back--my muscles are very tight there. I'm not overweight and never have been. Other than my chronic issues (anxiety, fibro, IBS--which just started up again in Nov, after being fine for YEARS) I almost never get sick. The chronic stuff is QUITE enough for me. So many of my friends will post how they have the flu, migraines, colds, etc. And I would kill to JUST have that, and trade all this!
Ive had IBS since I was 11.

And thanks for the breathing help. I go to therapy and have been since I was a teen and try to do breathing when I'm anxious. I try to also do guided meditation before bed since I have so much trouble falling asleep. Always been a night owl.
Posted 7/13/2015 5:19 AM (GMT 0)
Ok i think if you do not get some help with it...it can be very intense...

But with help, meds, therapy, light exercise, , topical pain relievers, supplements...

You can get better! I was my worst in my 30's . I was not getting the right help for it then and thought i might be in a wheelchair..

But over time , i got better help and improved

Raised my kids, did lots of volunteer work, traveled some...

Sounds like your medication is helping.

If fatigue is a big issue...research dribose m ...get yours fruits and veggies!

Just never give in to the idea that you cannot be better than you are today..you can feel better..its hard at times to find just what works for you...but you can

I lucked out a bit cause my drs wife also had it..so he could guide me some on what to skip trying...and things to help...some of it i just had to study and figure it out on my own.

So i do not believe at all that you are not going to get better..you already found a medication that is helping....

Are you stretching?

Do you use a topical pain reliever? There are many good ones!

Come on you can do this!

Lj
Posted 7/13/2015 5:50 AM (GMT 0)
The only reason I'm on disability is I have much worse problems than fibro. If I just had fibromyalgia I would still be out in the work world.

I've got a lot of my fibro pains under control. They are tolerable most days. My RA will probably put me in the NH or Lupus in the grave first.
Posted 7/13/2015 5:55 AM (GMT 0)
Austen gave you great information. Please don't let this frighten you. I have had Fibro for 28 years and it is not a progressive illness. I'm also have Crohn's disease, which is a disease of the digestive tract, and have also been a diabetic for 25 years and my diabetes is in excellent control too. I'm doing better than I have in years. I am now 68 years old and live by myself and take care of my home and gardens by myself, too. I'm totally independent and I plan on keeping it that way.

I do stay active, take supplements, and eat healthy and I feel better now than I did some 30-40 years ago. But I also keep a positive attitude and that helps me also. In Fibro 101 there is a wonderful link about maintaining a positive attitude when you have chronic pain and it's very good so do read it.

Lastly, I used to suffer from anxiety big time, on Valium four times a day, and was a mess. Then I started thinking of all my blessings, kept my thinking positive, and looked to my faith in God and I now don't have anxiety. It took practice but now being positive is my normal behavior. Studies have shown that a positive attitude helps with health, too, so give it a try.

I hope you are starting to feel better now. Our members have given you a lot of reassurance and that's great!

Sherrine
Posted 7/13/2015 12:44 PM (GMT 0)
phixgrrrl, I hope you have a better day today. Those late night fears can often get the best of us; we've all been there. This is a great place for support. :-)

Lucinda, I'm so glad you found the link I posted to be helpful. It's a pretty long article, and I think they've asked us in the past not to post entire articles here because they take up so much space on the server. But I'll post the link again. It can be copied and pasted into the address bar and gotten to that way:

http://www.niams.nih.gov/health_info/fibromyalgia/#f


There are tons of resources listed at the bottom of the article with website links to some (what I consider) reputable fibromyalgia sites. The National Institutes of Health (where the article comes from) is a US government entity, and I definitely consider their information to be medically sound.
✚ New Topic ✚ Reply