Fibromyalgia Thread

Discussion in 'disABILITIES Community Board' started by toocherie, Apr 30, 2009.

  1. rosanab1031

    rosanab1031 Mouseketeer

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    This was the case for me as well for some time. It hurt more than it helped with the pain but I found a chiropractor that I absolutely LOVE now. She is awesome! She actually does some massage first to warm up the muscles. I actually enjoy my visits now and feel so much relief. I try to go at least once every other week.

    I am not a medication person either. I take some ibuprofen when the pain gets bad and some vicodin if the pain gets REALLY bad. But that's it.

    I also go to accupuncture which I have found to be very beneficial now that I have found the right one :) I have muscle damage in my left shoulder from a car accident and the cold has had me in agony. Went for my first appointment with this new guy yesterday and the pain was gone! Of course it is back today because sleeping is just painful. Lol. I'm doing two sessions a week for now until the relief lasts longer then we can cut back.

    I has an issue with my last accupuncturist who was just constantly pushing his home made herbal supplements on me. I decided to give them a try but they made me feel icky :( I told him they were upsetting me stomach and he was like... "Oh... well keep taking them". That was the last time I saw him! Lol.

    Hope that helps!

    As for me, things are pretty normal. I started doing yoga again and have definitely felt better. I go to a class called Yin Yoga which is extended holds of stretches. Very uncomfortable while you are practicing but the after effects are A-MAZING! I always feel so good walking out of that class :) Plus, I started working there 4 hours a week so all my classes are free! It's glorious! Haha. Work is killing me. Trying to get my own business off the ground to make some extra money. Maybe I will make enough some day to live off of. So if anyone in SoCal needs a makeup artist I'm your girl! Lol. Also going back to school to get my esthetician license so I can do facials and stuff :) I'm really excited.

    Hope everyone is doing better. Read everyone's updates and I am very sorry for what so many of you have had to go through this winter :(

    Much love and many pain free hugs to all :grouphug:
     
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  3. mommasita

    mommasita DIS VETERAN Moderator

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    I see many..:lmao:... I would say my primary is my Rheumatologist, he really is amazing.. Understanding, kind, and he believes me, and tells me I am not crazy...
    I also have had a few brain surgeries, so the Neuro's are always in their too..

    Rosanb.. Awesome on the yoga.. I hear SOOO many wonderful things, I wish I could go.. Maybe one day I will get the all clear, but I am SUPER excited for you :goodvibes I wish I did live nearby, I most certainly would.
     
  4. DisneyJillian18

    DisneyJillian18 Mouseketeer

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    I wish you the best with your business, I know what you mean with work. I can't find anything that I can do comfortably! Currently have a desk job, sitting for 8 hours a day is killing my back! I wish we had yoga where I am. I live in a small town! I have practiced at home at did like the results! Might have to find the time to squeeze that in!
     
  5. DisneyJillian18

    DisneyJillian18 Mouseketeer

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    I did try a Rheumatologist, she simply told me to deal with the pain. I need to try to find a good one!
     
  6. mommasita

    mommasita DIS VETERAN Moderator

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    I so agree. I so one very near to my house, and he had ME believing I was just about crazy..

    Any good Dr is so hard to find, but I find these all the more so... I hope you can find one..
     
  7. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone:

    Welcome to our new people. Happy to have you with us. :hug:

    I used to see a chiropractor years ago before I got real bad, and he was pretty good; helped with my back and neck and shoulder pain. I haven't gone to one since but maybe I should try again.

    So I'm not working. I'm a mess right now, physically and mentally. Everything hurts, I have extreme weakness, and I'm lethargic. :(

    DH booked us on next year's west-bound panama canal cruise, for our anniversary, especially since we canceled the cruise that we were going on this fall. I hope we go on that cruise. It's 14 nights, with 8 sea days, which we find so relaxing.

    Anyway, I hope everyone is ok. I've been trying to keep my mind off of my aches and pains and depression by looking up the ports that the cruise will go to and reading people's trip reports. It's hard to keep my brain focused for more than a little while, so I've been bookmarking a lot of sites.

    :tinker: Hugs and pixie dust to everyone. :grouphug:
     
  8. mommasita

    mommasita DIS VETERAN Moderator

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    SeaSpray: So sorry to hear what you are going through.. It will get better.:goodvibes I hope you get to go on that cruise too!! It is fun planning isn't it?

    I need a vacation, and am looking, but with all the renovations, it is has to be a la cheap..

    So it seems I am always complaining.. My Aunt who I love dearly had an aneurysm burst Saturday and had a stroke.. My cousin (her daughter) is a singe Mom to two and needs to work.. So, I am watching her children after school.. Total 4 kids LOL, and feeding 7... It is the least I can do, and it works out because I live directly across the street from their school... It just isn't easy with the renos and NO counter tops yet..... My Aunt is over the critical stage, but seems to have lost a lot, so it may be a while (if ever) for her to fully recover.. She is 65..
    Meanwhile, I think I have mentioned my cousin 25, who had a brain and spine tumor 10 years ago, and was in remission.. She has been in NICU for 10 months, and it seemed there isn't much hope. We pray and pray for this lovely young lady, and life which is NO WAY FAIR... They actually are both in the same ICU at the Neurological Hospital here...

    I have had my period every 2 weeks since January, placed a call today and spoke to my Dr's secretary who seemed totally alarmed. I told her I am just exhausted, and if this is peri-menopause, is it safe? I am waiting a call back on that..
    My Rheumy faxed in my paperwork to my insurance, and I am awaiting a decision on that.. Which always freaks me out.. It has been 5 years on LTD , and I just don't know.. With the surgeries, stroke, brain loss, now talk of EDS.. Tearing of all my labrums, shoulders, hips.. I guess I am petrified at the thought of being refused.. I check the mail daily, but nothing yet..

    Sorry for the length..

    love and gentle hugs all around :hug::hug:
     
  9. SeaSpray

    SeaSpray Disney World fan since 1976

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    mommasita: How are all of the renovations coming along? I know they cause a big mess and interruption to normal routine, but it'll be worth it once its over. :)

    I almost had a(nother) breakdown on Sunday night. I found out that my sister (she lives in NJ) was rushed to the hospital because she woke up that morning and kept fainting when she tried to get out bed. Her husband took her to the ER because they thought she might be having a stroke (she's 61). When I spoke to her on the phone she sounded so weak, and they still didn't know what was wrong with her. If my DH wasn't having surgery this week then I would've been on the train to NJ the next morning! My sister is scheduled to her have her other hip replaced next week, and on top of that, he husband fell and broke his shoulder so now he needs surgery too. It's just too much to deal with, all so soon together like this. I wish I could be in NJ to help them, but their daughter lives very nearby and helps them all the time, but the stress is getting to her, too. :(

    In other news, I had an EEG done today. Not sure how long it takes the report to get to my neurologist.

    I haven't had so many anxiety and panic attacks, ever. I only leave the house when I have to, for doctor appts, etc. I am so glad that my husband will off of work for a while after his surgery because I feel better when he's home.

    I have started to see a new psychologist because my regular guy is sick and dying. I miss him so much. :(

    My fatigue is pretty bad these days, too. And since leaving work almost 2 months ago, I don't stress as much about it. I have applied for disability, but still no decision as of yet. From what I understand, most people get denied first, then have to appeal the decision.]

    Well that's all from me. I hope everyone is doing ok. :grouphug:
     
  10. mommasita

    mommasita DIS VETERAN Moderator

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    OMGoodness, so such you are going through..:grouphug:

    I know it is easy to say, but one day at a time.... Everything just happens at once.... Lots and LOTS of love and hugs to you..:grouphug:

    The renovations are coming along.... I ordered a special granite sink, so tomorrow DH and I will bring it to my cabinet and counter people.. They can cut the hole, and install the counters (hopefullY) next week :cheer2: We are now in the process of the rest of what we opened up. Floors, painting, etc... It just goes over budget no matter what..

    :grouphug: everyone..

    My Aunt is now home in a rehab program in her house.. She seems honestly pretty amazing....... Some loss, but not total... It may sound bad, but I am SO glad I don't have the kids this week... I love them, but it was a houseful..LOL... My daughter is in Washington DC until Saturday on a school trip, so it is quiet.. Too quiet..:rotfl2:
     
  11. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone:

    Just wanted to say hi. My DH had his shoulder surgery on April 18th and he's still home from work. He might go back next week. He's been going to out-patient rehab 3 times a week. He's feeling pretty good these days.

    The pollen here is so bad right now that everyone of us in my house feels "sick"; sore throats, sinus pain, headaches, etc. That nasty yellow-green pollen is all over everything outside, so we can't have any windows open. It was in the high 80s today. This weather is crazy.


    Physically I feel lousy all the time. I'm just trying to hang in there. I will see the neurologist next week to get the results of the EEK and MRA and blood work. I really need to make an appt with my rheumatologist, too.

    How are all of you doing?? :grouphug:
     
  12. mommasita

    mommasita DIS VETERAN Moderator

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    SeaSpray: Glad to hear DH is on the mend.. ugh that Rehab is rough though.

    No pollen to be seen, but I seem to have the constant sniffles, and what feels like allergies.. Great warm weather and sun here.. Sitting out as much as I can. Love it..

    Sorry to hear you feel lousy.. Hoping for good and positive results..

    Found out I did tear my achilles..:eek:.. Waiting to hear how badly.. I see the Dr next week.. Last week I had a cortisone injection in my right hip. OMG OMG OMG. PAIN.. worse than my brain surgeries.. I thought I would just pass out later that evening. honest to god.. Dr said my bursae is so full it was leaking. If this doesn't work (it isn't) he is kinda worried in what is the cause of all this happening.:headache: .. My daughter lay on me gently to watch the hockey tonight, and it felt like someone just tore my hip right off, or lit a match to it.. the pain is honestly just through the roof..

    Aside from that, we are strolling along.. Sink and granite counter is in :woohoo:.. Dh is doing the rest of the floor upstairs, painting (all in his spare time, in the evening), returned my backsplash :laughing:, can't decide on a new one... Now I need to pick and find $$ for furniture as upstairs has none.. HA HA.. this will be gradual.. Thankfully we got a nice return on our income tax, but it will still be gradual...

    My son's last day of college is tomorrow.. I am praying with all my might for good marks.. It is SUCH a struggle for him.. I don't know how this will go..

    Oh yes, I started topamax 3 weeks ago, and I have had only ONE migraine since.. I also dropped 10 pds :yay:.. It is a very gradual increase week to week, and I have found it difficult with moods, so I hope it works out, because it is the best for migraines I have had in 20 years.. THe doctors are worried for the weight loss, as this is a side, and I can afford perhaps a little, but not a lot.. hoping it is the pill for me.

    gentle but a lot of hugs all around:grouphug:
     
  13. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone :wave2:

    mommasita: *ouch* on the Achilles! I've heard that is very painful. :( How did your doctor appt go?? Is your hip feeling any better from the cortisone injection?

    I'm jealous of your new kitchen! :flower3: Our kitchen is so old and out-dated and we've just been maintaining it since we bought this house 15 years ago. I bet your kitchen looks gorgeous! Eventually we will get around to re-doing our kitchen.

    How did your son make out with his grades? I hope they were ok. I can't believe how much more we (the general "we") worry about our kids the older they get! lol :crazy2:

    My older son, the one who is on disability, has a job interview tomorrow. He is working with an employment counselor who he met via our state's vocational rehab program. He's so nervous! :scared:

    I'm glad the medication is working for your migraines and I hope the side effects aren't bad. :hug:


    My DH went back to work yesterday, although he is continuing with physical therapy after work a few times a week.

    I found out last week that I have been denied to disability. Oh well. :( From what I've read, 70% of people who apply are denied the first time they apply.

    Also our beloved psychologist who was priceless to us for these last several years has died. :sad: He only discovered that he had cancer about 6 months ago. I miss him so much and feel like without him, I'm on a tightrope without a net. :sad1:

    I hope everyone is doing ok and just too busy to post. If anyone is reading and not able to post due to not feeling up to it, then big hugs for you. :grouphug:
     
  14. rosanab1031

    rosanab1031 Mouseketeer

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    Hi everybody!

    Oh goodness it has been a very long and stressful year already! And we aren't even half way through! :sad2:

    Anyway, normally Tuesday would be my last day of work but the district decided to change our calendar so now we are off next Friday :faint: I can't wait to be finished!

    My vacation is coming up soon and as much as I love planning, no one has made it very easy so it's been stressing me out as well :( But we are still sure to have a wonderful time! I have never been to Italy or Disneyland Paris so I am super excited! ::yes::

    Another downer is my bf just doesn't seem to get fibromyalgia and he keeps comparing me to his lazy mother who stopped woking at age 23 and has been living with her mother ever since. Um... I'm 26, work full time, and go to school part time. How the heck are we even close to comprable? UGH! It's been really bothersome not having people around me who understand. I'm really sick of hearing "mind over matter". Sorry but it doesn't work that way! It does to a point for the pain but I am exhausted all the time. But i still get up and go to work and do all of my school stuff and help him with his! I really don't know what more he expects. I can't always get to the dishes or laundry but when he is at home more days than I am, why can't he do it? Yes I said I would do those things when we first moved in together but things change! I can't always stay on top of that stuff. I'm actually looking to hire someone to come in and clean the apartment. Someone has to step up and I think it's pretty obvious who but... it's not seen the same way.

    UGH! Sorry for the rant! Lol!

    Hope everyone is feeling better. I have been scanning the updates here and there and I know we are all having some issues :(

    Much love and many painfree hugs for all! :grouphug:
     
  15. SeaSpray

    SeaSpray Disney World fan since 1976

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    [​IMG]


    I saw this on Facebook and immediately thought of all of you. I think it so accurately depicts what fibromyalgia feels like.

    This was the caption, originally in another language, then translated into English. But the picture is worth a thousand words, no matter the language.

    Om Fibromyalgi var synligt på kroppen * om vi kunde se sjukdomen (som annars är osynlig) men som dagligen gör värre ont än den som är frisk kan föreställa sig * för alla er som inte förstår hur Fibromyalgi kan vara så "ont", outhärdligt, fruktansvärt och kroniskt att ha.......här kan du "se" hur sjukdomen skulle se ut om den var "synlig" över kroppen

    If Fibromyalgia was visible on the body * if we could see the disease (which is otherwise invisible) but who daily make worse evil than that which is healthy can imagine * for all of you who do not understand how Fibromyalgia may be "evil", intolerable, appalling and chronically having ... ... here you can "see" how the disease would look like if it were "visible" over your body ❤ (Translated by Bing)
     
  16. rosanab1031

    rosanab1031 Mouseketeer

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    Yikes! Lol! A very disturbing picture but probably quite accurate. Eesh! Ya think people would start believing us then? Haha! Thanks for the post Seaspray! :)
     
  17. mommasita

    mommasita DIS VETERAN Moderator

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    :wave2:All.. Sorry I have been MIA..

    DH came home saying he needed a vacation desperately.. SO, we went on a a quickie to Vegas.. My Dad stayed here.. We left early last Monday, and came back Friday.. FIRST TIME EVER going anywhere without the kids.. My best friend and her boyfriend came also.. Hotel was free :cool1: from Myvegas I play on Facebook, and we fly basically the same, so a cheapie, quickie,and just lay out by the pool.. He has been working 6 days a week, and doing the renovations at night, so it caught up to him.. The only thing we did was rent a car and see the hoover dam, not much walking, and some shopping :)... It was their first time, so we let them do their thing.. Now we are back to finishing up things..

    Still waiting on my son's marks .. They should arrive soon.. My hip is VERY bad, my ankle is actually doing better. I see my Dr June 3rd, and the shot did absolutely nothing.. Very sad about that..

    SeaSpray: So sorry to hear about your psychologist, by goodness that is quick..:guilty:... I have heard the same about being denied, and also hiring a lawyer? It gets better results?
    How was your son's interview?
    :grouphug: to you

    rosanab1031: Please don't apologize.. I totally understand, MORE than you know.. I wish I had the answer, but I simply don't. I wish they did get it, invisibly illness is just that.. invisible.. Compassion is totally needed. My husband is slightly better. Not enough, but getting there.. There is no mind over matter.. If you can afford it, and are happy, then honestly I would hire someone, totally none of my business of course, just putting that out there.. If all else is good with the two of you, your days and left over energy would make you a happier person :).. tell me to mind my own, It is ok;).. I hope you have a fabulous trip!!!!!!!!!!!!!!

    That picture is amazing isn't it? It hurts to look at

    Gentle hugs:grouphug:
     
  18. chewysmom

    chewysmom Mouseketeer

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    My first time posting in this thread (I think :upsidedow ) but this raises a huge red flag for me. I've had fibro for many, many years (diagnosed 12 years ago at the age of 27 but had it well before then) and it's only gotten worse as far as pain level and what I'm able to do. If your fiancé isn't supportive now, I would be very scared of what happens when you get close to 40 (as I am now), when kids come along (if you want kids anyway), etc.

    My dh is mostly supportive , but he has a philosophy of "working through the pain". Well, that's not my motto.:rolleyes1 In fact, if I were to try that, I'd be bedridden for a week. My dh does know all about pain though, as he has several disc problems and RA as well. His mother has fibro as well as a host of other problems, so he's been around pain for a long time.

    Not trying to be all up in your business honey, but just wanted to offer advice. Hope I didn't offend. :flower3: :hug:

    To everyone else: hi! :flower3: Sorry we have to be here. :( I currently only take advil and ultram for pain-but it's not even coming close to helping. I'm pretty anti-med, but I can tell that's going to have to change. ;) I've tried Cymbalta (made me even more depressed) and lyrica-just didn't like it.

    I currently work part time (2-12 hr shifts on the weekend) and homeschool my 2 kids. It's getting to be too much. Dh finally has a better paying job, so I'm hoping to go really part time by the end of the year. *fingers crossed* as that has been my goal for 10+ years-but I was always the bread winner until this year. ;) My dream is to not have to work and just stay home w/ the kids and homeschool them, but I don't know that that will happen. :( The job will go before homeschooling goes. ;)

    Yesterday was very, very rough. Someone worked for me :woohoo: so I had big plans for my day off. Ha! I was barely able to move all day. :sick: Felt like I had the flu, although it was just the fibro rearing its ugly head. Feel a bit better today, but still in lots of pain. :(

    Here's to a pain free day for every one. :sunny:
     
  19. mommasita

    mommasita DIS VETERAN Moderator

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    Hi Chewysmom: :welcome: I agree... I had mixed opinions and emotions posting what I did.. I am almost 45 with 2 teens, well one 15 and one 18, but I still stay teen ... My DH is pretty mixed, he won't say work through it, but won't help either.. LIKE EVER.. However, it doesn't bother him if we needed traffic lights in here, and until my our recent kitchen renovations, we always used paper plates.. but that really is due to my brain surgery, and long recovery.. So if that is ALL that comes between you, that is why I said it.. Having lived almost 20 married years, and I get that DH works 6 days a week, and the last thing he wants to do is housework, and if he ever did say a word to me, I would hit him with a 2x4..:laughing:

    I am VERY anti-meds myself.. I have a mother who is addicted to pain meds, so I don't think I give any an honest go... Cymbalta and Lyrica did nothing for me either.. I can never recall why.. I am on 100mg twice daily of Topamax for migraines , and this is helping that issue.. I actually have a Rheumy appt tomorrow at 8:45 am, hoping he can offer some help with my issues..

    That seems like a heavy load with the homeschooling.. I hear you, the flu is EXACTLY what it feels like. Every fiber hurting.. I hope for an easier day for you..

    Well folks.. Tomorrow I have the Rheumy.. NOT looking forward.. This was the follow up, and I have to tell him the cortisone did ZIP for the bursitis in the hip :sad1:... I don't know what to say.. I don't want any more medication.. I will just take it day by day, and see what he says..

    Hugs everyone.. gentle ones:grouphug:
     
  20. TulipsNZ

    TulipsNZ Mouseketeer

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    Hi, I am just joining in, I was directed to this forum after stating I was worried how I would cope with our trip to Disney and all the standing due to Fibro. I'm still trying to figure out how this will work
     
  21. disneyseniors

    disneyseniors Mouseketeer

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    Thanks for starting this thread for us fms people:banana: I've had fms and OA for several years too. I take tramadol 3 x day and alleve in the am. This helps but does not take the pain away. I might increase my tramadol to 5 or 6 a day while on vacation if needed. I started on a treadmill at the gym before our last WDW vacation and it really helped with the stamina and all that walking at WDW. I would suggest slowly walking more. I know it's hard to do, but just keep trying. It really helps:lovestruc I feel better in the mornings, so my hubby and I go to the parks early, then come back to the resort for a rest for a few hours. It I feel too bad to go back to a park in the pm, we just hang out at the resort. The best advise that works for me is to go back to your room and rest every day!!! You will probably never feel painfree, like me, but the rest period really helps. I tell my grandkids that gramma needs her nap time too. They think it is hilarious:)
    Thanks again for this great thread and to all others who have posted:hippie:
     

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