Fibromyalgia

Posted by sandymom @sandymom, Fri, Mar 8 8:36am

Since 1983 fibromyalgia has cost me my job home life. Daily struggles. One day up next down. What to do to cope? See psychiatrist med nurse pcp etc. let me here your story the sufferings this has caused. Any help please!

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@lioness

@grandmar I just read what you sent from AARP Why take any drugs then with all these side effects What are Dr,s @drug companies doing to us it's shameful they are not helping us just lining there pockets

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Hi!
I would like to think that sometimes you just have to weigh the odds.
It would be impossible for pharmaceutical companies to develop medications that would address ALL the variables of their patients.
That is why it is so important for us to be our own advocates and to take an active role in our medical treatment.
Ronnie

Liked by lioness, gingerw

Hi fellow pain warriors. I'm 54. My Fibro took a bad turn 2 1/2 years ago and I'm slowly doing better after having a lot of physical therapy and nerve blocks, ablations, and massage. I've been following Dr. Skip Pridgin's protocol since 11/2018 and am feeling less pain. He's doing a large study using 500 mg of Famcyclovir 2X/day & 200 Celebrex with the morning Famvir. Google him for more info. I also take Methaxalone, Magnesium, Curcumin, D3, a good multivitamin 2X/day, HRT, Imitrex, Plaquenil (am also diagnosed with Lupus), and I just got Botox injections for my migraines. I was a long distance runner, golfer, tennis, cycler etc. etc. It's been quite an adjustment. I'm doing Acceptance and Commitment Therapy (ACT) for Pain which has been very helpful. Other than the constant engulfing pain, I'm happily married, have 3 grown kids and 3 older stepkids, 2 dogs, a cat, a parrot (great, chatty companion), and wonderful friends. I'm not dying and try to focus on how blessed I am. I definitely get into funks and have found Youtube videos about ACT, Mindfulness, yoga stretches when I'm up for that, and other fun stuff to be helpful, too.

@jamie2020

Has anyone ever come across an ANA TITER 1 of 1:32:0 with a homogeneous pattern being positive that I was tested twice for but, was told negative for lupus, rheumatoid arthritis, etc.? Can these results ever change from being negative and you should get re-tested for lupus, rheumatoid arthritis, etc.? My joints all over are getting worse and are so stiff. I do have fibromyalgia but no physical/occasional/pool therapy are helping or making it better if it's supposed to be truly caused by fibromyalgia. Help! Any thoughts would be appreciated!

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Hello @jamie2020, welcome to Connect. You mentioned that you have fibromyalgia. Has your doctor suggested any treatments to help with the associated pain other than the therapy you mentioned? There is another discussion on Connect where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Chronic Pain > Fibromyalgia
https://connect.mayoclinic.org/discussion/fibromyalgia-3/

Has anyone ever come across an ANA TITER 1 of 1:32:0 with a homogeneous pattern being positive that I was tested twice for but, was told negative for lupus, rheumatoid arthritis, etc.? Can these results ever change from being negative and you should get re-tested for lupus, rheumatoid arthritis, etc.? My joints all over are getting worse and are so stiff. I do have fibromyalgia but no physical/occasional/pool therapy are helping or making it better if it's supposed to be truly caused by fibromyalgia. Help! Any thoughts would be appreciated!

Hi @jamie2020 I want to join @johnbishop in welcoming you to Connect. I moved your post to this discussion so you can connect with others who have fibromyalgia. I'd like to tag @grandmar as she also has fibromyalgia and may be able to offer you support.

Back to you @jamie2020 I wanted to repeat John's question, has your doctor suggested any treatments to help with the associated pain other than the therapy you mentioned?

@jamie2020 I was diagnosed with Fibromyalgia in 2000. Came on quickly and I had no idea what was wrong with me. It is called an invisible illness. I seldom mention thus as many do not believe how real the pain is. I live each doing the best I can and some days I do very well. I never know which day will be better. I know some things that do make the fibro worse for me. We are all wired differently. I have learned things here at connect. The most important thing for me is self care. I try not to dwell on the things I have lost and what I can do to continue moving forward.

@parus Exactly what you said. Some people think that I am just trying to get out of things, to not be involved with happenings. They simply do not realize that I just cannot do it that day. Learning to take care of yourself sometimes means shutting others out. It's for your good but it's difficult to convince others of that.
Ginger

@gingerw So true as the P.T. @parus an I just went through her shoulder and my legs Now sciatica I have to think this isnt helping my fibro But we have to say No we just cant do it Your right we need to take care of ourselves and just live each day not worrying about tomorrow

@parus

@jamie2020 I was diagnosed with Fibromyalgia in 2000. Came on quickly and I had no idea what was wrong with me. It is called an invisible illness. I seldom mention thus as many do not believe how real the pain is. I live each doing the best I can and some days I do very well. I never know which day will be better. I know some things that do make the fibro worse for me. We are all wired differently. I have learned things here at connect. The most important thing for me is self care. I try not to dwell on the things I have lost and what I can do to continue moving forward.

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@parus….mine came on like a thief in the night, right after a difficult pregnancy. Threw me to my knees, crippled my heel cords, causing bleeding in my feet, causing painful spurs. Then it attacked everywhere. Completely bamboozled me, having been a runner and exercise queen. Reduced me to tears. Getting care and getting a diagnosis took time. I was actually relieved when a rheumatologist diagnosed me, somehow that soothed my bewildered head.

After being put on many trial drugs, all not effective, I decided to take nothing, and use natural means to reduce inflamation. Learned to detect a flare coming on and enjoy the occasional reprieve. I quit going to doctors for many years. When more serious maladies came along, I began again seeing doctors. I hate dividing up my medical care, so as much as I csn, I stick to my GP. I'm with you though, self care is essential.

@gingerw

@parus Exactly what you said. Some people think that I am just trying to get out of things, to not be involved with happenings. They simply do not realize that I just cannot do it that day. Learning to take care of yourself sometimes means shutting others out. It's for your good but it's difficult to convince others of that.
Ginger

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@gingerw and @parus Its hard to deal with and accept the limitations Fibro puts on us. When I say that I'm not sure what I'll be able to do tomorrow and others doubt me, I am hurt and angry! My in laws came for a visit 6 weeks after my husband's 2nd major surgery (spinal fusion) within 6 months. My MIL said to me that I need to just suck it up and go do it, when she wanted to go to the grocery store. So one day I did just that– and paid the piper the next 2 days. I must plan my outings and recovery time. They were here 10 days. By day 9 she was finally showing some understanding.Yay!
Ginger, I like your statement "learning to take care of yourself sometimes means shutting others out"

@sandytoes14 It surely does hurt. I get the line of how I am making excuses. Worse yet I am depressed and feeling sorry for myself. There are people I have needed to shut out of my life. I am better because I have done so.
I am sorry about those suffering from this illness which is more of an affliction. It helps to know my symptoms are not imagined. Sorry to have company but thankful. Today has been better. I was able to be out in the sunshine and it felt lovely.

Liked by lioness, jmjlove

@parus In my volunteer job I shared a little bit bout my maladies with the supervisor. She also has things that are going on with her but she does a good job masking, so she could completely relate. She always double-checks with me before passing on a new/different task just to be sure it is something that I'm okay with. Of course she knows by now that I rarely am going to say no! I am concerned about the training I have coming up in 3 months because I don't know what my physical quality of life will be at that point. Today I feel to be pretty good but I know it's not as good as it was three years ago five years ago 10 years ago. I can only hope that the stress of flying cross-country in the middle of the night and five days of intensive workshops and training is not going to throw me completely into a flare and make it impossible to work with for several weeks.
Ginger

Liked by Parus

@gingerw

@parus In my volunteer job I shared a little bit bout my maladies with the supervisor. She also has things that are going on with her but she does a good job masking, so she could completely relate. She always double-checks with me before passing on a new/different task just to be sure it is something that I'm okay with. Of course she knows by now that I rarely am going to say no! I am concerned about the training I have coming up in 3 months because I don't know what my physical quality of life will be at that point. Today I feel to be pretty good but I know it's not as good as it was three years ago five years ago 10 years ago. I can only hope that the stress of flying cross-country in the middle of the night and five days of intensive workshops and training is not going to throw me completely into a flare and make it impossible to work with for several weeks.
Ginger

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@gingerw I hope it doesnt either just do what you can Talk to your charge person explain to them I would suggest it might make a difference as when you cant do something he,l or she will understand maybe ,? We are here during that period to talk take care

@parus

@jamie2020 I was diagnosed with Fibromyalgia in 2000. Came on quickly and I had no idea what was wrong with me. It is called an invisible illness. I seldom mention thus as many do not believe how real the pain is. I live each doing the best I can and some days I do very well. I never know which day will be better. I know some things that do make the fibro worse for me. We are all wired differently. I have learned things here at connect. The most important thing for me is self care. I try not to dwell on the things I have lost and what I can do to continue moving forward.

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@parus Hey Parus, well I’m now in rehab hospital going home on Friday. I knew it would happen soon and it did. They withdrew pain meds. I can remember the nights I sat up crying in bed, with no help for pain. We’ll see how things go now. I can’t take nsaids because I’m on a blood thinner. I am scared, but can just pray that I don’t have any of these episodes again. I did do something which I think will help me. I got all the positive, uplifting people here, to write in my notebook happy, forward moving kinds of thoughts for when I’m depressed. Maybe that will help.
So, after a month’s stay for severe cellulitis, it’s over! And I’m healed!

@marshall Happy to hear you are clear of cellulitis now ya

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