Quick! Tell me what you know about Fibromyalgia? Well, I learn more about it all the time…I don’t like what I find and I like less that there isn’t much I can do about it. I especially dislike that I am unable to work and what I have to do to try and get social security disability. Honest, if I could work, I would. I always worked up until 7 years ago and even after I first got sick, I still tried to work. This seems to be a progressive disease. As it is progressing.
Went to my rheumatologist yesterday and I just came out of there as confused as when I went in. “Well, we could try this, we could try that” meaning different medications to treat the pain. Nothing will cure this. On top of the fibro, I had a couple of irregular blood test results. Don’t think I am going to kick the bucket, but probably adds to my discomfort.
The worst part for me, and has been for a long time is the lack of sleep. Oh I am tired. REAL tired. Exhausted, actually. Most of the time. I can’t think real straight and I can’t even go to the mall and walk around, I conk out and the pain kicks in.
I found this article on Fibro on the Mayo Clinic Website. Anyone interested in learning a little more please read..it’s probably the best explanation I have found.
So..I will take my medications, and try to do stretching and what exercising I can. But my social life is a disaster, and travel is tough. And working is out of the question. Now if Social Security could just help me along a bit..we are hoping for a hearing in the next couple months. I could REALLY use some prayers as some days I get very discouraged. I paid into Social Security for many years..honestly I miss working and the companionship and especially the feeling of being useful.
Thanks for listening and getting a little education today…I am not alone in this hideous syndrome, that’s for sure.
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I totally understand! yeah, nothing like going in to the doctor and feeling worse when you come out. I know how you feel about being exhausted all the time. It does get discouraging. I am praying for you to get disability. I really hope you do. It is a help, not enough to live on, but a help.
ReplyDeleteI know you would work if you could, that is what SS is for...not for those who just don't want to work and those that just want to live off the Government....so I wish you luck and am so sorry for the discomfort and frustrations you are going through.
ReplyDeleteHUGS...you know I care.
ReplyDeleteI will say a little prayer for you and hope that you get help. I have a friend with this disease and I know it's tough.
ReplyDeleteBlessings,
Sissie
I do not have any personal experience with Fibromyalgia, but I have some advice. Make sure the doctor that is treating you believes that your pain is real. I use to work as a receptionist in an OB/GYN office and I use to get calls from women who were in extreme pain and the nurses would get the messages I took and blow them off. When I asked about this the nurses said that the women calling had Fibromyalgia and that that is the diagnosis the DR.'s give people who's pain is "imaginary". I could not understand this and how the nurses and doctors could be so dismissive with these women who were clearly in pain. So that is my advise, find a doctor that cares and believes that your pain is real and treatable.
ReplyDeleteHope that helps.
I have to be honest too - I don't know much about it. There is a woman at church who has it.
ReplyDeleteDo you take vitamins - meditate or anything like that?
Can you go to a health food store?
Try a different doctor?
I have heard about medicine on the TV.
Sorry i don't know more.
sandie
I know a couple of people who have fibromialgia. Not an easy time, for sure. You're in my prayers.
ReplyDeleteSissy just do what you can and remember if people don't understand don't worry about what they think.
ReplyDeleteIf you feel better staying in bed one day then do it . Take your pain meds and remember we love you !
xoxoxox
I have had Fibromyalgia for 19 years and I have Chronic Fatigue also. I also have DVT (Deep Vein Thrombosis).
ReplyDeleteI was in a car accident in 1991. I was hit from behind at a red light. I wasn't diagnosed until a year later though.
I am one that doesn't like to take anything that can harm me. I did physical therapy for a bit. It help and then I just had massages and boy did that help.
I have found that Magnesium helps quite a bit. There is a laxative effect with magnesium so you have to watch how much you take though.
Try to stay hydrated and to exercise if only walking or riding a bike or swimming. Swimming is the best.
I have found that There will be periods of time when I am not in "pain" and not so tired.
Then there will be a flare and I will be very tired.
I worked for many years after the diagnosis. The reason I am not working now is more because of the DVT.
This summer didn't help any because I had three kidney stone surgeries. (DIDn't know I had these awful things).
Because of theses surgeries I am in a flare but I am trying to handle it.
Motrin and magnesium and other vitamins and minerals are what I talk. Also warm moist compress when the ache is bad. A hot bat and or very warm show work wonders.
I have sent a prayer up for you...hope you get your disabilty....I know what it is to suffer and have to work in pain...until it got so bad I couldn't take it anymore. God Bless Trish
ReplyDeleteBeen there still doing that! I have hired a lawyer to help me with SSI and as soon as my unemployment is up I am going to try to get SSI. I have had Fibro for 15 years and just this past January had to quit work! I too am not the quitting type but this disease knocks you on your butt!I am taking Tramadol, Lyrica, Cymbalta all for pain! And still I have such bad days I can't move! I have a lady who is the best with massages and she helps a lot. Yoga is another great relief. It helps stretches your muscles and keeps them from cramping up. It is very hard to do anything, period! Weather has a major effect on my condition, anytime is changes I know days ahead of time. I have good days also, then I cram everything I can possibly do in that day, then I pay for it the next day. Just hang in there, and you have to fight for your SSI!
ReplyDeleteWeb MD had a Fibro newsletter that I have sent to my email and it tells of updates on the disease and new meds that are out there. Check it out.
If I find out anything new I will surely let you know.
(small) Hugs.
Pattie @ On Hollyhock Farm
Hugs & Prayers coming from Canada. I have a friend who suffers from it and I've attended a support group with her on many occasions! My friend finds comfort in others who suffer the same way ~ something you should look into! xox
ReplyDeleteOh my gosh, thank you all so much and I will take your suggestions and try to use them..sometimes I feel really alone in this and its so good to hear I am not..that alone helps..hugs to you all xoxox
ReplyDeletemy mom also suffers with this so i know a bit about the pain. good luck with your social security.
ReplyDeleteI have fibro too and cannot work. I haven't tried to get disability, I figured it would be a pain to do so. I haven't worked in over 5 years. I have had fibro for 21 years. This is my new med and it helps quite a bit for pain...Savella. I have good days and bad. I don't sleep well.at.all!
ReplyDeleteHugs!
Kim
Sending you a virtual (soft and gentle) hug. I know my aches and pains are acting up this past week. The change of seasons seems to make things act up. On the positive side I had a Dr visit this week and she knew as soon as she saw me in the waiting room that I was not doing well. (Not that I want to look in pain in public!)
ReplyDeleteThanks for sharing the link. we need to help each other be informed.
I find it theraputic to write about my FM. Sometimes depression sets in and by writing, I feel I'm releasing some of my frustrating thoughts. I hope you find some relief by writing too. Hugs
ReplyDeleteI think I sent you a personal e mail over this post. I have known many friends who deal with us. It is an awful disease. Get treatment with a large research hospital. You are blessed living in California where you have a variety of teaching hospitals. They will have the very best treatment currently available. Hugs to you! Anne
ReplyDeleteI should be posting this on your lovely P.S. post, but then I saw this and after reading it, had to post here and tell you that while my disease is different, I know the frustrations you are having. I will keep you in my prayers sweet lady:)
ReplyDeleteThank you for sharing...and for stopping by my blog to wish me a Happy Pink Saturday.
Sorry I'm just getting around...I think I overdid it last week and it caught up with me this weekend...of all weekends!
Hugs,
Suzanne