Fibro patient, me, always letting family members down when flair ups happen alot

Support
21

Oh, Brian, bless you for mentioning your mental funk! I'm experiencing it right now, feeling hateful when I'm driving and just blah at other times. It's the depression again!!! I hate when it breaks through! So I'm glad that you've mentioned it and I'm not all alone in it. Pain makes me feel hateful too. Today I want to scream and throw plates. Too bad nobody is throwing a Greek wedding, where I could throw plates for free!

You seem to have it better under control now, Brian. You sound better than you did several weeks ago. I'm glad to see this change in you; you're getting there, heading in the right direction!

22

saf, I am with you. Pain causes depression - depression can cause stress - stress causes more pain. And I too feel so much anxiety before a family get together and just realized it when I read your message that I was always saying I had a sore throat, or the flu, or a contagious disease as an excuse not to go to these functions. I guess I unconsciously realized that these are things people can see or relate to so they understand and even feel sorry for you. Not so with fibro! I so wish you had said what you wanted to to that inconsiderate woman in the doctor's office. Now, peoples' lack of understanding is making me be a liar on top of everything else.

That is a great idea about sending flowers and/or a note of apology. I am definitely going to use that.

I am trying to work on living in the now, in today, but find it hard because I am obsessive compulsive as well, so am always wanting to plan ahead and want to be in control all the time - of everything and everyone. I even have to have my house spotless before I can lay in bed in pain and need to be in control of everything that is transpiring in my home. It drives me nuts - not to mention what it does to my spouse.

Today is a good day for me. Yesterday I had to get groceries and take my mom to the hairdresser and this morning woke up in excruciating pain after spending a night tossing in pain. Couldn't even leave my bedroom so grabbed my book and I have been sitting and reading all day. And surprise - I don't feel bad mentally about doing nothing all day. So...this is another day I got through. Hope the guilt doesn't set in later!

JoJo

23

Oh PG: That response is great! Going to use it in future when situation warrants it.

JoJo

24

I got a lot of pain and brain fog relief by a combination of: Lyrica, weekly acupuncture from someone who works with fibro and chronic fatigue patients (the best thing I ever did was to get this treatment on a weekly basis, pain went from an 8 to liveable), meditation, select use of Ibruproben and Vicodan (1/2 tab in the morning gets me going and helps calm that morning pain). Do the meditation early afternoon to help ward off those pains.

I also found that focusing on a short term goal helped. I increased my pain meds on days when it was bad and I wanted, truly wanted, to speak at a conference or attend one. I knew I would pay for it when the conference ended but the energy from being in a room of people with stimulating ideas carried me through the day.

It's okay to give into your fibro. There are a lot of famous people who work despite chronic problems. Ratio out your time based on how you feel that day. It's okay not to be productive one day so that you can spend 4 hours productively another day. Give yourself permission to be one with the fibro and not fight it. THe stress and energy spent being angry at fibro takes away from what you could be enjoying.

25

Pg: I am glad you mentioned the word 'hateful' because that is how I feel a lot of the time and it makes me feel so bad that I have that type of feeling. There is no particular object of my hate - I just 'feel' it. Glad to know I am not alone.(But not glad you have to suffer it too)

JoJo

26

Linda. Very good advice.

JoJo

27

My therapist told me to do one nice thing for myself each day- perhaps eat something good for me, watch a funny TV show, read, whatever you want.

Did you know that dark chocolate is good for us? The flavonoids in it stimulate T-cells in the immune system and that suppresses neuroreceptors that cause pain, depression, mood swings. So eat a square a day. Don't be afraid of medications- I use Lyrica and Cymbalta which works better than prozac. Be careful when trying new drugs as you will react more to change than most people (fibro does that). I had a bad experience with nortryptolene, lorazipan, triazadone (that one was really bad), somo, and Celestid. Frankly I like diazepam for bad depression (valium).

Also- for most of us we can use more Potassium. Talk with dr about K-Tabs which are time released but try over the counter first. When you feel a bit nauseous and dizzy,those are symptoms of lack of Potassium. Also shaky hands, muscle weakness that come on suddenly.

28

The disability attorney takes 25% or up to a maximum of $5000. Mine got $5000. We never went to court or anything. I was lucky. I got my disability before I was diagnosed with fibromyalgia.

I also suffer from depression as well as bipolar disorder. I see a therapist and a psychiatrist. I had agoraphobia while on Oxy. When I stopped taking it, it gradually stopped.

I let people down a lot also. It is just a fact of life. The only place I will drag my is the pain clinic. They have seen me crying, pleading; I was there yesterday for Botox for my migraines. He did shots in each collarbone which he has never done before.

Best wishes FlowerPower

29

It's kind of sad that you can't win a case on your own and have to pay someone $5000 to do it for you, when your resultant disability will be such a small amount. But, on the other hand, at least it gets the job done.

Thank you, tricky, for letting me know about the amount involved. At least now I know. So IF my rheumy ever gives me a proper dx, then MAYBE I can actually apply.

BTW, I don't blame you a bit for showing up at pain mgmt crying and pleading. I know I've done it too at some doctor's office or other. Probably several.

How are the shots to the collarbone working out? Did they help with the migraines? BOY, do I feel sorry for you or anyone else with migraines.

30

Your family needs to realize you can't help this and you much rather spend time with them than be in this horrible pain we all can be in. I think most of us w/fibro have had a friend or family member not believe us and oh boy is it ever so hurtful. I am usung Allsup to help me with my case and they have been great, you don't win you don't pay. Whats nice is they are doing all the work. You can check into them or private attornis but you should do it. Hope you feel a bit better soon, Gentle Hugs your way, Robin

31

Petunia,

You should be able to apply before an exact diagnosis. You still suffer with symptoms and have plenty of medication and doctor and hospital records to support your claim. Tricky got it before diagnosis too. It shouldn't stop you. It's the same here if you have been suffering symptoms for so many months. Can you get it backdated too?

Jo

32

Dear Flower,

I do not know your Mom, but have you considered having her come to you, and allowing her to comfort you? Perhaps if you would allow her to be with you more, she would have a better take on how ill you really are. Have you tried to give her information on FMS?

I understand perfectly how ill you are, and how bad she must feel, as I have both FMS and autoimmune arthritis. I can only encourage you both to do all you can for each other, spend as much time as you can with each other, even if it involves her coming to you and fixing you both a cup of tea and a piece of toast with the understanding that you may only last 30 or 60 minutes even in bed.

I hope that you can find relief from your pain, unfortunately we have few Doctors that will make housecalls now, so you must get to them! You really do need to address this phobia of leaving the house. I had PTSD after my third time of being rear-ended, and worked with a psychologist for about 2 years, she also helped me to deal with chronic pain. I am all the better for it, and though because my arthritis is of the spine and it is difficult for me to ride in a car, pain wise, she got me back behind the wheel.

There is good help out there, you are going to have to get up and go get it, my friend. I mean this in the nicest of ways, but I think your Mom is right about that! I also think it is important that you spend all of the time that you can with her!

Hugs,

SK

33

Yes, they work for about 2 1/2 months. They only get $5000 if you have that much money. Otherwise, they get 25% of your past income. It may not be $5000. I guess that isn’t that much really since 25% of 20,000 is $5000. So it doesn’t take much. But if you haven’t worked, they won’t get much.

34

Why thanks for this input! I'm going to apply. Phooey on it. You're right. I've been in treatment for fibro for months and for the back for far longer.

I dunno about backdating it. How would that occur?

PS: Sorry to hear that your system is cracking down too. It's insane to force people into dire poverty or even homelessness simply because they got ill.

35

Thanks, Tricky. I've made such a low amount that they'll be sorry they took my case, lol! But this helps to know. I feel like you're all helping me ease into getting there (applying) cause I have a lot of middle class shame about it. Esp. cause my sister thinks it's the most horrible thing ever to do. Although lately I think she's changed her mind, since the Lyme Disease incident she had.

36

So nicely put!

37

I can only imagine the mindset of the world 17 years ago in regards to fibro. Probably pretty much like your mom's mindset. Get that makeup on, smile, and get going.

Yeah, right, whatever. We can barely move but make sure to look good and smile. Not.

Well, they mean well. If ONLY life were that simple though, huh?

38

Hi Flower, you need to take care of yourself, support is great but when all you have is negative support you might as well not have any support at all.

I have a mother who in one aspect wants all of her friends and such seem like she’s supportive and understanding of my problems however, when she’s talking to my sister she doesn’t understand how I can work games when I volunteer but I won’t get a job. I have been actively been looking for a job since I was pushed out of my former job. But I haven’t been hired yet. My husband is wonderfully understanding but sometime and I don’t really think he even does it subconsciously makes a comment about cleaning and why I don’t do it. I would say he’s 100% more supportive than my backstabbing mother is. However, its all on me in how deal with it. Yeah sure it ticks me off but to let it roll off my back is my realization that I #1 am the better person and #2 stressing over it is going to cause me a lot more problems than its worth. I love my mother but I don’t have to like her.

You do what you have to to make yourself happy. Because in the end its about you.

39

One thing that helps me is to plan to do nothing the day before I have something planned. When I over do it Things get worse for me. I also have learned to plan simpler things.

Your mom is from a different generation She is not going to believe that you stop things just for pain. So you may be butting your head against the wall trying to convince her that you need to chill because of the pain. Her generation is great at ignoring things that slow them down.(or denial) Think of the things that she did in her youth that we, today would not even consider. Depression the answer was either Buck up, or pray.

Many people do not understand something till they go though it. So I am glad that most of my family does not get it.

My mom did not grasp fibro till one day when we were painting my bed room and I sat down on a stool and fell asleep with a wet paint brush in my hand. A few years later she saw me slip in to brain fog and made me take a nap ( I was 49 a little old for mom to tell me to take a nap) but then like people of her age she woke me up after an hour so I would be able to sleep at night. So she half way got it. She also ran me though an at home stroke test.

Pain is only pain. I lived in pain for 20 years before I figured out what worked for me. Getting very Buddist about pain helped me to deal with the fact that it just is. I also think that spiritually that all things come from God, even pain. Often just meditating on "this pain is a gift from God"You don't have to believe it, I did not but oddly it helps.

Stretch for 10 minutes before you get out of bed, starting with the small stretches and working up. while doing this I look at two large garden paintings that I really like. Sometimes I yell and that is ok.

For years people told me I was nuts. They told me that loud sounds don't hurt, or that sometimes I was just so dumb and should knock it off. I was also very frustrated because I knew something was really wrong.

I get the not wanting to leave your house thing. My grandma had it and I have it to a lesser degree. Holding something in my right hand calms me down a bit. I am not sure why but It works for me, maybe you can find a thing that works for you. The first few steps are always the hardest for me but once I get out its ok. Of course I want to run home the whole time. but I face the fear. I know it is unreasonable and self destructive. I figure it ranks with my fear of clowns. Both are unreasonable and may never be figured out but neither fear serves me at all.

Oddly I have come to the relaxation that most pain meds do not work for me unless I take enough to pass out. Not a good solution.

All I really want to do is sleep watch, tv and eat tons sugar. My body give me false signals of how to spend my life. I am much better if I figure there is just switch in my brain that is messed up and ignore it.

I just got a dog and she really helps me with anxiety, and has a great ability of waking me up when I am having nightmares. Having me also forces me to walk a mile a few times a week.

when I feel like crap I love cuddling with her on the couch.

The only person I can really change is myself. That gives me a little peace when people around me are going 65 mph and I can only manage 35 mph.

40

You are right about the pain pills, but I might still get an hour of some relief. I’m not taking oxy anymore or Vicodin. I did not like the side effects. I only get 15 a month so I can’t do too much damage.

Amen to planning nothing before drs appts or whatever. If I have to do anything two days in a row, I am hammered. My dad finally understood when our friend, the pharmacist, explained how bad it was.

I am guilty of staking out permanent residence in my bedroom. I try to get out at least once a week. I kills me. My 3 dogs are on the bed with me now. I stretch some but not enough. Your post is inspirational.