Fibromyalgia Thread

[pannm]

Haven't posted in a while, I had surgery to remove a tumor and things had been really crazy since. I'm back to normal, thank goodness!

DD has had a few good days, a few bad days and a few really bad days. She is having more good days than bad for the time being, so we're thankful for that. It's been about a month since she started her water therapy and we're convinced that it's been helpful. Switched over to 100% water therapy for a while, because doing 'dry therapy' was miserable for her. We are starting EZ flow yoga, but I wanted to wait on that until after we get back from Disney. I hate to start her on something new when it would have to be interrupted.

We did go to Frozen...TWICE. It was sooooooo good! Both of my girls LOVED the movie and I did as well. We saw it in 3D, which was awesome!!!!

We are so excited to leave for Disney! It's a 7 hour drive for us, we couldn't be happier. We'll have lots of fun. We have usually used the Disney transportation, but this time we will be driving from our Disney resort to each park. I think it will be much for comfortable for our DD to just get into our van instead of having to wait for a bus!

 

[pannm]

Anyone here use a wheelchair while at Disney? My DD's doctor told us to rent one for our visit there. DD has been having a really rough time with her knees, legs and feet right now. She can't take much walking, which doesn't mix with our Disney trips very well (at least our regular, jam packed and super walking ones!!!) it will definitely be a different trip! We leave in a week. I am a planner, and haven't really done much research on wheelchairs at Disney yet! Just started looking at it today.

Her Dr. also signed paperwork for a handicapped parking permit. My husband is picking it up tomorrow- so we'll be set there.

DD had an absolute melt down yesterday because she was so worried about our trip! She's scared about not enjoying anything with how badly she's felt lately. We talked to her about the wheel chair today and she felt a huge rush of relief!!!

I know fibro. is something that is usually 'helped with moderate exercise' but 'moderate exercise' and Disney don't fit well together. The more I think about it, the more I think the wheelchair will save our trip from going bad! Happy that we scheduled our Dr.s appointments yesterday- gives us a few days to set things up and get done with some last minute things before leaving!

We are very excited!

 

[rosanab1031]

Hope everyone is doing well. I'm back to work so didn't have time to read everyone's recent posts.

We have a new addition to the family! A beautiful stray cat has been hanging around our apartment. We gave him some love and attention and he wouldn't go away. Lol. That's when we decided to feed him and then yesterday my bf called to let me know that he had let him into the house. LOL! So he is now ours. Lol. Took him to the vet today to have him fixed and to get all of his tests and vaccines done. Don't want him passing anything to the girls. Baby Boo is having some trouble adjusting but it's only the second day. I'm sure she will be fine. The cats in the house now officially outnumber the humans. Lol. We just have to keep him a secret because we are only allowed to have two cats. It's easy to get away with though because our apartments don't allow dogs and we know at least 4 tenants that have them. Lol.

Well I should definitely get back to work now! Hope everyone is doing well especially during all of the crazy winters I know a few of you must be having. Stay safe and warm!

Much love and many pain free hugs to all

 

[SeaSpray]

Hi everyone:

I'm sorry that I haven't posted here in a while. I haven't been feeling great, extreme fatigue, migraines, dizziness, etc, etc, etc, as usual.

We cancelled our Disney Fantasy cruise that we were booked on for September. Due to my younger son getting an awesome job right out of college last year, he made too much money for us to be able to claim him as dependent anymore. LOL I mean, we are very very happy and proud of him for doing so well, but we thought we'd be able to claim for the last time. So.... now we owe $3,300. in taxes. And we will now adjust our withholding for this year so that we don't owe again next year.

And it's been a rough winter this year, like it has been for almost the entire country.

How are you all doing? HUGS everyone.

 

[mommasita]

Hi.. Every day I mean to post, but I apologize.. I tend to run and lay low when I am feeling blue.. Just overall blech, and this snow crap doesn't help..

We are STILL renovating, but seeing some light.. Went to buy a dishwasher tonight, as it was my Dad's gift to our new kitchen.. We have NEVER had one . Hoping to finish painting the kitchen and then do the floor, and the granite people can come do their thing.. Then onto the rest of the gutted house..

Been dealing with a lot of crap with my mother.. She is hallucinating and her idiot husband keeps making excuses. I got home care involved, as he told me terrible things that made me even sicker.. I don't know what love is, because nobody loves me in my house, but he loves her. He feels sorry for my children, they have no love .. Now insult me all you want all day long, but NEVER say I am a bad mother.. I am not perfect, but I assure you my 2 priorities are my children... SO I cried that whole night, and was swollen faced for 3 days... Anyway, I got over it..

I received a paper from my insurance today they want all my Dr's appt and results and any testing faxed to them.. The best part, NO signature.. I have no clue who it came from, and any cost is for me to pay. lovely eh.. I will start making those calls Monday..

Hugs to everyone

 

[tiggspring]

Well I have been MIA for two months.. SHAME ON ME! I have tried to catch up on things here but not sure I remember what I have read lol. Basically thing with me are ok

 

[tiggspring]

ok I will try this again as somehow I sent last post and cant seem to edit on my ipad......So I have been doing mostly ok. Had two weeks in Jan that I was completely bedridden after our house was in the sixties for several days during that cold snap that had us 17 below before the wind chill! Our electrical system has to be completely replaced and was getting red hot at the box. not a good thing with electric heat, even if it is geothermal and low watt usage. So I got really cold then total crash. falling asleep sitting up, almost while driving (only went 5 miles) so Dh stayed home and drove kids for a few days til I got back to being safe on the rd. I will not drive like that! We have electrical fixed temporarily. Now my house is a fibro friendly 73 Mostly it been the kids crazy schedule that has kept me mia. I haven't had a full normal week since before Thanksgiving. Yesterday they had a late start on an early dismissal day! exactly 2 1/2 hrs between drop off of youngest and pick up of older two geeze! So the rhythm I depend on to manage my Fibro is not there and I am all over the place. One minute doing good , next crash. I really think I would be in a bit of a remission if I could put myself first and stay on a steady schedule. My weight is highest its ever been which in an odd way is good. My Dr always seems to see me between crashes and improvement so my weight seems fairly steady. now he will get a look at how fat I can be! I start the migraine meds next week just before my visit. I haven't had many migraines so I haven't bothered to start but I would like to start before my next visit in case I have any side effects. Besides its supposed to help with weight loss and my migraines are slowly coming back. On the good side my back is great even without any chiro since Dec. My Chiro is going to be really mad at me but I cannot see him on snow days and all my days to visit have been snow days so he will have to take it up with a higher authority! lol

My DH is finally off his antibiotics for lyme and titraiting off his anti fungal. He is getting much better every day! he is almost his old self. back to working 100hrs a week. mostly from home, and he is as tired as you would expect any normal person with a crazy schedule to be. He is excited to get me to this dr for the same treatment since my lyme titer looks worse than his did. I am cautiously optimistic. I have no doubt I will make some gains but I try to remind him if I had an active infection with lyme for 20 yrs then my brain is fried and the memory, concentration etc that is so important to be "normal" most likely wont come back. He wants me better so badly but we really need to be realistic.


Momma I hope your house is done soon. I think reno ontop of this crazy weather would have put me over the edge. Seaspray hope things are improving. Pamnn hope your trip was great! Glad that growth was manageable. To all those I missed sorry for my foggy fibro brain.


Sending pain free vibes and Pixie dust to all.
(and no more winter weather!)

 

[mommasita]

Hi everyone.. I read everything, and everyone is in my thoughts daily.

I think the winter is playing a factor for all of us... It is the winter that doesn't want to end.

Tigg: So happy to hear your husband is on the mend.... That was a long ordeal wasn't it? HOping for some regular schooling.. Here we haven't had to use any days, they never cancel. even if I wish they would.

So my news had me down for a day or two.. Now I seem to have the bursitis in my hip (according to my MRi and U/S) and my achilles is torn... Waiting on an MRI to see how torn, but the pain ........ I am on a list for the geneticist, as they really think I have EDS, and this is why all this is happening.. Was told to stay off my feet as much as possible, and then my step-father calls as my mother went by ambulance.. I went yesterday, and will tomorrow, I skipped today.. Her kidneys are not functioning, and she has blood clots..

Well, take care all.. IT is SOOO cold here it is nuts, and this as I mentioned, seems to make things so much worse.

 

[SeaSpray]

Hi everyone:

Looks like a few of us have been MIA for a while. It's been an especially rough few months for me, health-wise.

Without going in to the gory details, I am now on 2 new "mental health" medicines, along in an increase in Ativan. I also have now applied for SSDI (social security disability insurance). I gave my work my official resignation today, as well. I tried for a long time, I really did, but I just can't continue like this.

I know that most people get declined the first time on their initial application. Then I guess I will have to appeal the decision and see what happens, a lot of people still get denied, then the third time you go before a judge and he takes everything in to consideration and makes a decision. Well I'm hoping that I'm of the few who gets approved with the initial application, but I'm also realistic.

My DH has been so supportive through all of this. I think it's because he sees how bad things have gotten for me. My younger DS22 is still doing very well with his job in Boston. Older DSalmost23 is doing ok. He has an appointment tomorrow with an employment placement agency that helps people with disabilities find work.


I hope all of you are ok, as well as all of your family members. Mommasita, tigg, rosanab, panm, pitter, and anyone else that I haven't mentioned.

 

[SpiritedHaunts]

Could anybody send me a link to a good fibro message board...maybe one for MS and or MD as well. After a recent PT exam, the only one where manipulation and movement questions were asked, she brought up that this may be more than week muscles and be connected with an auto immune disorder. My aunt has fibro, can it be genetic? The PT specifically mentioned MS and MD, however no doctor seems willing to do any testing.

I am looking for any help on if the symptoms match anything. Since the doctors refuse to prove they's nothing wrong they seem to also be refusing that there could be something as well.

Thanks.

 

[mommasita]

SeaSpray: Sorry to hear that, but you seem to have tried VERY hard in my opinion.. I often got tired "for you" reading the different shifts you were trying to pull.. Good luck, and I hope it goes in the first round.. Also glad you have the support from DH... Offering you big hugs, I have really taken more Ativan than usual for me of late.. STRESS..

Hi SpiritHaunts... I honestly don't know many other boards for Fibro.. I am not sure on genetic science wise, but to me it is.. Of course, my opinion.. Have you been referred to a Rheumatologist? I went through about every test you mentioned.. Honestly, that was the Dr (and still is) who listened and believed in me...


Well, crappy week here.. My DD picked up lice for the first time in 15 years (EVER really) and lo and behold so do I .. This doesn't bode well for someone with OCD, and every other D.. We have treated, and re-retreated, and it is seems to be a bad infestation.. I am just exhausted cleaning everything 50x a day it seems, but keep on praying something works.. I almost went to the ER with chest pains, but took an ativan and calmed down a little, it was THAT bad... Sorry if I made anyone scratch.. We also just got hit with 25cm of lovely white crapolla.. FREEZING temps, and this as we all know, just royally makes everything hurt more... I have bags to my ankles, and just have no appetite, and have to try because my weight isn't steady..

Well gentle hugs everyone

 

[SeaSpray]

mommasita: thanks for the hugs. I am really very down these days. The worst I've ever been, actually.

The psychologist that I've been seeing for over 5 years is retiring because he found out that he has cancer and he's an older gentleman, and he doesn't know if he will even make it through the chemo. I love this doctor. The help that he has given to me and my DS23 is beyond priceless. I know this sounds very selfish of me, but this is the worst possible time for me to not have access to him. He knows me so well and knows my entire back story. I have an appointment with new woman therapist in a week, so I think that will be strange, going in and having to explain everything that's happened and especially how I'm feeling now.

My PTSD has sprung up again, not to mention new and worse arthritis and fibro pain. I really want to jump off a cliff. I'm sick of everything in this world.

Anyway, I hope everyone is doing ok.


mommasita: Sorry to hear about the lice. That's something that I haven't had to deal with when the kids were in school, maybe because I have 2 boys and they kept their hair short. I hope that you're able to rid yourself of them quickly although I know it often takes several rounds of treatment,

 

[tiggspring]

Could anybody send me a link to a good fibro message board...maybe one for MS and or MD as well. After a recent PT exam, the only one where manipulation and movement questions were asked, she brought up that this may be more than week muscles and be connected with an auto immune disorder. My aunt has fibro, can it be genetic? The PT specifically mentioned MS and MD, however no doctor seems willing to do any testing. I am looking for any help on if the symptoms match anything. Since the doctors refuse to prove they's nothing wrong they seem to also be refusing that there could be something as well. Thanks.

If you type in the word links or studies or xmrv or lyme in the thread search and look for my tiggspring you will find links regarding all things fibro. I have been keeping trac of the studies for many years since i have experience in th medical field I see this stuff all the time. Sorry I cant repost them right now but Im not on my computer. As for the family link they used to say no but now it seems debatable. If you cant find the posts on the thread let me know and I will try to find them and repost. I used to be on several time a week but for about a year and a half I really have been struggling and go MIA quite a bit. I will be sure to look back in the next day or to to be certain you found what you were looking for. If you live anywhere on the east coast be certain to test for lyme and get a copy of the full titer. They say you are negative even if several markers show up positive. Lyme literate Drs treat even with only a few markers and have had sucess. My DH had lyme just went through a year of treatment and is BETTER!!!! yea! Conventional treatment did nothing and he had all the same symptoms as FMS.


So sorry your sick ((((Huggs)))Good Luck!

 

[tiggspring]

Momma and Seaspray sorry you are both having a rough time.


My DD with long thick hear had liice several times and it was AWFUL! thing is since the school nurse who seemed obsessed with lice and love to make parents feel bad left our school district no more lice! My DD said she would pick through everyones hair with bare hands and spend lots of time combing kids...which isn't necessary to diagnose so I think she was spreading it...she took great joy in it ....it was weird

Seaspray having done counseling for many years, I can only imagine how stressful this can be. Try to keep an open mind though, sometimes switching it up can open upon up new ways to deal with things. As therapists we all have are own way of doing things and while that can be good and comforting it also can limit progress at times so you may find this is a blessing in disguise therapy wise. So sad about your therapist it like losing a friend.


Well my life took another crazy turn. First like most of you I was completely overwhelmed by the snow. My kids didnt have one normal week for two months completely putting my pacing loving fibro into a major tail spin. then 3 weeks ago my dd got a ganglion in her hand just days after she announces she is going to be a computer engineer and will be using said hand to earn her living. we took her to walk-in and got it checked out so no biggie for now but then the next day our 4 yr old cat started backing up everywhere but not peeeing and began crying and acting weird. of course it was sat after vets close so needed to take to banfield clinic in petsmart 35 min away at the very last shopping plaza I allow myself to go to because of my migraines Well after he was checked it turned out to be crystal blocking his bladder after suggesting treatment and a $1000 a night overnight stay (YIKES) we opted for treatment and return the next day..he only had a catheter so they would be doing nothing but looking at him which we did quite nicely at home so after several days going back and forth and a ton of cash they give him a "muscle relaxer" to help recover from the cath. By now I am feeling AWFUL you know the kind where you dont know if you can survive one more step? So in this tired stateI dont check med online because Im not taking it and my cat has no issues with meds. Well apparently I got a bit of this med under my nails while putting it in the treat and it didnt wash off. At 3am I wake up and think im getting a cold, difficulty breathing and throat scratchy...take an antihystimine and go back to bed then I think mmmmm what was different today and I look up the med on the phone and I realize the med is not a muscle relaxer its a alpha blocker cousin to the calcium channel blooker that my Dr told me if I ever took again they could kill me! I was in full anaphylactic episode! When I looked in mirror my face was swollen, throat, tung, roof of mouth too. The meds seemed to stop but not reverse the episode so I sucked it up til morning and went strait to the walk in got steroids, doubled my anahystimines and got breathing tx. Two days later when my lungs still wouldint clear I was put on more breathing meds but it took me a week to recover and two weeks for me to be "normal" Then a week from my episode I was up in the am feeling my normal fibro self and my husband walks in the room and says I I think I tore my retina. We go back to clinic but they couldn't tell so we rush to pickup kids and go the hour to Pittsburgh where one of the best clinics in the country is. He hadint tore his retina it was 70percent detached! So we were allowed to go home and wait for surgery because they felt a rested team that did this every week was better than the team they could assemble at 10pm and aparently you a few days window before the point of no return. He is out tow weeks now and things look good. he will be out of work about 5 weeks, he is sleeping sitting up to keep gas bubble they use to hold the retina in place in the proper position and very tired but he should regain most of his sight. this was his "blind eye" which the glaucoma severely effected 30 yrs ago but his uses it for depth perception etc. A day after surgery he could see the nurses fingers if he looked to the side so that was really good! I think they really thought he would have nothing but shadows but by what he sees at home I think he will get most of his sight back

So the short story is my cat almost died, I could have died and my husband almost went completely blind but were all good now!


Hope you all feel better with the spring weather!


Sending pain free vibes and Pixie dust to all!

 

[mommasita]

SeaSpray: I too had a close relationship with my therapist, and she left (not quite the same).. I was so upset.. It wasn't easy to start anew, but I actually felt more comfortable with the second one.. It isn't selfish, your heart is in the right place.. So sorry to hear that.

OMG TIGG .. That is certainly more than anyone can handle.. So sorry to hear all that, but VERY glad everyone is ok... It all seems to come in bunches, doesn't it... I think we all be glad for some sunshine and warmth...

Well, we RID OURSELVES .. After spending countless dollars on crappy pesticides, I ordered from licesquad, and so far so good.. I wasn't too bad, but my daughter who has hair for 10, had omg 10,000 nits.. I honestly thought we would have to chop it all off, but this stuff is miraculous, and no pesticides... We still comb through, and use their shampoo for another week... Thank goodness...

Still renovating, but the kitchen is almost complete .. The rest is basically painting and flooring.. Oh, and finding $$ for furniture now that it is all open concept.. It will be one room a month..

Gentle but huge hugs all around..

 

[DisneyJillian18]

Hello all!
I am new to the fibro board,and I had a question.
I recently started seeing a chiropractor, I am not one to take medication, so I am trying a different route for fibro pain. He asked if I knew if I produced a lot of yeast? I said, not that I know of, thinking oh Goodness. What kind of DR. are you?! He told me to spit into a glass of water first thing when you wake up! Don't go to the bathroom, just get up a spit into a glass of distilled water, let it sit, come back and check it, and let me know if it makes "strings" Well even though I thought he was crazy, I did it this morning, and lo and behold, my spit makes "strings" it was fairly gross looking to be honest. He also told me to stop eating refined sugars? Has anyone had any experience with this? Am I seeing a crazy guy or what?
Thanks in advance!

 

[mommasita]

Hello all!
I am new to the fibro board,and I had a question.
I recently started seeing a chiropractor, I am not one to take medication, so I am trying a different route for fibro pain. He asked if I knew if I produced a lot of yeast? I said, not that I know of, thinking oh Goodness. What kind of DR. are you?! He told me to spit into a glass of water first thing when you wake up! Don't go to the bathroom, just get up a spit into a glass of distilled water, let it sit, come back and check it, and let me know if it makes "strings" Well even though I thought he was crazy, I did it this morning, and lo and behold, my spit makes "strings" it was fairly gross looking to be honest. He also told me to stop eating refined sugars? Has anyone had any experience with this? Am I seeing a crazy guy or what?
Thanks in advance!

Hi, and Welcome!

I have never seen a chiro to be honest, but I am in the "try anything camp" ..

I wonder if everyone's would string though? did you ask, or did he mention?

 

[dawnball]

The spit test is generally considered bogus - there's a bunch of different things that can cause your spit to be "stringy" in water.

Chiros tend to like holistic therapies, and refined sugar is inflammatory - so they'd like you to stop.

I went to a chiro for awhile, and couldn't really tell that it helped with my fibro symptoms. It did help with mobility, and I should make a few appointments to get my lower back cracked soon, because I'm getting pretty stiff there. However, he also told me that he didn't think anyone every really "needed" pain medication - that cutting out dietary sugar and eating a "clean" diet would make all my pain go away.

 

[DisneyJillian18]

Hi, and Welcome!

I have never seen a chiro to be honest, but I am in the "try anything camp" ..

I wonder if everyone's would string though? did you ask, or did he mention?

I haven't found he has helped me yet, in fact when I leave I am normally in more pain. But I was going to give him a shot. I had my mother do the spit test, and her results were the same. He told me that a normal persons would just sit on top of the water. I don't feel like the refined sugar was giving me pain, and since stopping eating it, I am still in pain, so there you go. What doctor do you see? Thank you for your help!

 

[DisneyJillian18]

The spit test is generally considered bogus - there's a bunch of different things that can cause your spit to be "stringy" in water.

Chiros tend to like holistic therapies, and refined sugar is inflammatory - so they'd like you to stop.

I went to a chiro for awhile, and couldn't really tell that it helped with my fibro symptoms. It did help with mobility, and I should make a few appointments to get my lower back cracked soon, because I'm getting pretty stiff there. However, he also told me that he didn't think anyone every really "needed" pain medication - that cutting out dietary sugar and eating a "clean" diet would make all my pain go away.

That's what I'm starting to see, my mother did this test with the same results as mine. I haven't seen that eating a clean diet has helped me at all. He sells supplements, and I think he is trying to just sell me a lot of pills. Thank you for your help!