Fibromyalgia Thread

[tiggspring]

i am no longer working, but when i did work i felt so bad all the time with sinuses and a cold like illness. now that i do not work my sinuses do not bother me as much as before. i feel like when i am stressed, such as from working, and being run down all the time i get sinus problems and allergy attacks. i dont know if any one has this prob or not, when i am very tired or stressed or hot, my heart acts up and i get very short of breath. i almost feel as if i am going in and out of a fib or i am skipping beats. eventually as i rest it gets better. dont know if this is fibro related or something else.

Sorry it took me so long to completely answer your question about your heart. This is what I found out about my heart attack symptoms ie chest tightness, numbness in right arm and face, difficulty breathing and two years ago for 9 months heart skipping every 4th beat on a good day 6th beat

The heart skipping they couldnt explain why it came ie they said sometimes it happens as you get older . I did have a full work up ekg, sonogram and 24 hr heart monitoring for a month. the Cardiologist and I both agreed a stress test was not a good idea I have a very thourough internist and was very happy with the Cardiologist his intern did first workup and his mother has ms so he totaly got me. My advice regarding the skipping is get a heart monitor for a month. If they cant explain the skipping they really need to test what is happening when you feel "funny" and they cant do that on a schedule. Also if nothing is wrong you will know it and you can relax which should help with the skipping too. I went to my local amusment park on a good day and rode some rides that test my fibro. then called the company to run a check. My biggest fear is that I would finally have a good day go to the park with my kids and have a heart attack. Not the kind of memory I want my kids to have of going to the park!

As for the other symptoms mine are caused by muscle spasims in my chest. We finally figued this out after my first DD was born. Since I go into a decent remission when pregnant the chest pain was gone. Then as all the symptoms slowly retruned I noticed as the months past my chest muscles would quiver, then they would quiver more and freeze, theny they stayed frozen, then while they were frozen I would have chest pain shortness of breath and tingling in my right arm and right side of face. I use ativan when this happens now and it helps some. when muscle spasims are really bad I go to flexerill but one dose can knock me out for a day and keep me in a fog for another, so unless I am completely imobile which happens once a year or so I stay awy from flexeril. If you dont have musle relaxents you could try benadryl. it is what they use in nightime sleep meds and we used to use it to calm kids at the psych ward. Since most of us with fibro are very sensitive to meds this over the counter solution may work as long as you have used it before and know how you will react to it. otherwise you may want to check with your DR first.

Hope this helps

 

[tiggspring]

BTW melmathis i dont remember if I properly welcomed you to the board




orangecats2 I may have missed you too


Better late than never

 

[tiggspring]

Hi Tig! Could you give me a link or explain what you mean about "why we are sick"? I'd love to know the why. Thanks.

Back in oct a scientific american story discussed research that linked Chronic fatigue symptom to the XMRV virus. Just like lyme disease caused by they Lyme infection and some cancers are linked to viruses like HPV. A retro virus changes your DNA. Since many if not most of us have been diagnosed with both CFIDS and FMS (i have been) and for those that haven't there is discussion that they are the same disease with a wild viariety of symtoms so I think this is really exciting. Below are two links one from wikipedia that has an explanaition of retroviruses in laymans terms and the Scientific american article about the virus.



http://en.wikipedia.org/wiki/Retrovirus

http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

 

[brighteyes]

Bonnie you may be able to answer this.

My dr. said she might test me for the Ebstein Barr virus because as you know, I am constantly tired and fatigued to the point where I am yawning all the time. I even got my Dr. yawning when I went to see her.

But when I research it, it talks about cancer etc. I thought the Ebstein Barr was like Chronic Fatigue??

 

[tiggspring]

Bonnie you may be able to answer this.

My dr. said she might test me for the Ebstein Barr virus because as you know, I am constantly tired and fatigued to the point where I am yawning all the time. I even got my Dr. yawning when I went to see her.

But when I research it, it talks about cancer etc. I thought the Ebstein Barr was like Chronic Fatigue??

Sorry I didnt get right back to you my Dis posting is not working right and my Blackberry acting up. Guess the universe is trying to shut me up but it is not winning!!!

Anyway about epstine barr. It has been awhile since I have read up on it but I definatley know it is a virus that causes fatigue my DH1 had it when we were dating and I had a cousin with it quite bad and it took like a year to recover. It used to be called the kissing disease because it spread so easily through the teen population and was supposedly spread by kissing.

I think you keep geting cancer information is because it has been linked to lymphoma (like DH1 had) but even if positive I wouldnt worry about cancer because there is a lot of research as to a link to heredity causing Lymphomas. My DH1 leukemia support group was saying that for years and is why DH1 and I decided to never have our own kids. Since he was adopted and we didnt know his history. The reseach didnt come out until later I'm glad we didnt have our own kids I would be worried sick.

If you lookup epstine bar and Fatigue you should find better info and studies linking it to CFIDS although thaty have been saying that for years and nothing good has been found which is why i'm so excited about the xmrv reaserch as you know.

 

[tiggspring]

It's good to know that the bed is working for you. I wish it had worked for my mother. Enjoy your sleep time. Lots of us around here have a hard time with that.

Tiggs, not sure on the prices, maybe you could go to a mattress store? Do they have the number beds on display? You could at least try it out before spending the money. I can definitely feel your $2,000.00 pain.. We have that in our house too!!

Yep $$ pain and fibro pain somthing we both have in common. Hopefully with DH getting his Phd that will change. Hopefully it will change SOONER!!!!

QVC really does seem to have the best prices for these kind of things. Thats how I got my Pilates so cheap. Everywhere else it was twice as expensive. So it would have been a $800 clothes rack this summer

 

[tiggspring]

Well the universe my not be able to shut me up but DH can

Heading out with family for a few hours then a busy week gearing up for shcool. Propbably wont post till they are back next week. Besides my spelling and typing are gettin BAD

Have a great week!!!

 

[Tinker'n'Fun]

 

[tiggspring]

Bright Orange Tigger..... (See the Disney Reference), hope you are all doing well, and I will read the posts a bit later, but I need some advice please.

My left hand (yes I am left-handed) is tingling tons lately, mostly right under my thumb. Sometimes it goes to the second and third finger. It is pins/needles. Also, my left leg feel a bit numb after sitting. Anyone else with these symptoms know what may be happening?? It is getting worse by the hour... I hate being scared, and while my head knows it is most likely my neck, I still can't calm myself today. Thanks for any information. Diane.

Hey Tink just got your post on my Black Berry and wanted to answer right away. I'm am 99% shure it is one of two things either your neck or it can be a side effect of migraines. I have complicated migraines which usually means you get the symtom either before, during or right after the headache. If you have a headache it is very possible that is the cause. My complicated migraines come with a twist. I almost never get them with the headache but usually instead of one. Sometimes if I successfully treat the headache with ice I will get they symptoms you describe or lose my vison or speach like i did yesterday.

Now for your saftey I want to say this. These can be a signs of stoke too and for this reason If they keep getting worse I would go to the ER and have a CAT scan or MRI or at least a look over by a nurologist. I had to go to the ER several time when I first got sick to rule out heart and stroke issues. Now I have to live with the possibility that I will have one of these things and never know it. Since this is a new symptom for you If you still have it when you recieve this post please consider going to the ER or calling your DR.

LET US KNOW HOW YOU ARE!!!

 

[Tinker'n'Fun]

 

[brighteyes]

Tink

are u sure this is all it is??? These can also be signs of heart attack??? Are you having pain anywhere else at all???

I don't know I wish you would go to the ER and really get this checked out further.

I am sorry I wasn't here to answer your question or just give you support.

I really really hope you are ok and really really hope you get checked out...promise me????? PLEASE!!!!!!!!!!!!!! Gosh I hope you are ok you are my friend and I hope you are ok.

 

[Copy_Pixie]

Tink ~ So sorry about the tingling! However, I agree with Tigg on 2 points... 1) Don't take any chances with stroke. I'm so glad you did the at-home checks but definitely bring it up with your doc just in case. At the end of last yr I started having the same symptoms - numbness and tingling on my entire left side - my dr sent me to the ER immediately to rule out a stroke and then followed up with a brain MRI to rule out a brain tumor. 1000s of dollars later, & a few more tests, I went to a neurologist that confirmed Tigg's original diagnosis - complex migraine syndrome that manifests as both headaches and/or numbness. I am SO grateful to Tigg for helping me take some deep breaths and get thru that crazy time. I'm also really glad though that my dr was thorough & ruled out all the majorly scary things Hope that helps!

I have been in such a terrible flare-induced fog lately that I can't keep track of who I've welcomed and who I haven't LOL! So a huge welcome to all the new-comers! You will really enjoy it here!

In other world news, my flare is very strange this time... Definitely worse than I've ever experienced before but still with good dats and bad. I've been trying to get back into my Wii Fit routine, but it is kicking my butt! I know it is supposed to start to feel better after some time but I hope that really happens soon! I wanted to drop a few pounds before Disneyland in 29 days (!) but I feel like I'm just spinning my wheels sometimes...

Anyway, sending prayers and pixie dust to all for a magical, pain-free, Disney kind of week!

 

[EDuke98080]

Hi all!

I am sorry to read about everybody's flares. Must be the time of year as I am right there with you! I find that the worry about new pains and symptoms is the worst. Wondering if it is Dr. visit worthy or not and what horrible thing could be brewing that I am ignoring because I can't trust my body to give me signals that mean something. UGH!

It has been a long time.... I have been consumed by the process of moving my DD to an apartment. She starts grad school today. We dropped her and some more of her stuff off last night and as I anticipated I had a terrible night sleep and feel miserable. She has been home since last December after finishing college in 3.5 years and I am sad that most likely she has moved out for good. If any of you have seen Toy Story 3 I felt like I was living it as we were trying to finish packing up her room yesterday. Had all I could do to not burst into tears. I was pretty proud of myself until she started to cry when we were getting ready to leave the house and then it was all over for us both. (ok, crying again darn it!) My DS is a senior in high school and now I must refocus and get him on the road to college applications. Do any of you guys hate change the way I do?

Sorry I havn't been here to be as supportive as I would like to be. Hello to all I havn't "met" yet, I hope everyone is doing ok.

~Erika

 

[Tinker'n'Fun]

 

[EDuke98080]

Home from the doctors.. I want you all to know how wonderful it is to have a caring group of people who care for you. It is a saving grace and each one of you has a very special part of my heart/soul....

Okay, no stroke or heart problem, he did a neurological testing and an EKG. Didn't have too much time since they fit me in, but I will make another appt. next week and if he wants more tests, I won't fight him this time. Definetely hurt my neck/shoulder doing something that I usually don't do. Some times I push the envelope and this one was a doozy...

Since he did a physical and checked different points, I find that I am having a lot of pain in my shoulder, back, and neck. This is pushing down onto my hand. It is warm and tingly where he worked on them. So while it is worse, at least I know he is right... Well the EKG machine gave me peace of mind also.

Onto the complicated migraines. I guess with the change of weather it is time to make an appt with the neuroligist.

I am thinking of everyone, and since there is so many flairs, I am praying all will calm down soon. I hope you all know that even if you aren't posting, IT IS OKAY. You are still in our thoughts and we hope only good days for everyone!!

Diane.

Diane,

So glad that things are ok but sorry for your pain. Keep us posted on your progress

Erika

 

[tiggspring]

Tink ~ So sorry about the tingling! However, I agree with Tigg on 2 points... 1) Don't take any chances with stroke. I'm so glad you did the at-home checks but definitely bring it up with your doc just in case. At the end of last yr I started having the same symptoms - numbness and tingling on my entire left side - my dr sent me to the ER immediately to rule out a stroke and then followed up with a brain MRI to rule out a brain tumor. 1000s of dollars later, & a few more tests, I went to a neurologist that confirmed Tigg's original diagnosis - complex migraine syndrome that manifests as both headaches and/or numbness. I am SO grateful to Tigg for helping me take some deep breaths and get thru that crazy time. I'm also really glad though that my dr was thorough & ruled out all the majorly scary things Hope that helps!

I have been in such a terrible flare-induced fog lately that I can't keep track of who I've welcomed and who I haven't LOL! So a huge welcome to all the new-comers! You will really enjoy it here!

In other world news, my flare is very strange this time... Definitely worse than I've ever experienced before but still with good dats and bad. I've been trying to get back into my Wii Fit routine, but it is kicking my butt! I know it is supposed to start to feel better after some time but I hope that really happens soon! I wanted to drop a few pounds before Disneyland in 29 days (!) but I feel like I'm just spinning my wheels sometimes...

Anyway, sending prayers and pixie dust to all for a magical, pain-free, Disney kind of week!

Copy_Pixie

Thank you so much for the kind words. I'm so glad I was able to help back then. I was so scared the first two years I had those symptoms and I would do anything to prevent somone form feeling that way. I glad it helped you to know somone had the same thing. After 15 years of weekly if not daily nerological symptoms I can shrug them off but I vividly remember living in terrror that this would kill me. And they wonder why so many of us are depressed or anxious...well duh. I was blessed with a basic medical and extensive psychiatric bacground when I got sick and I think it is the only reason I do not have panic attacks, depression and major bouts of anxiety. That and a DH that will fight anyone that trys to dismiss me and can talk me through a crisis. LUCK LUCKY LUCKY

I know you really wanted to lose more weight. I didn't meet my goal either and thne gained 19 back but Disney is always magical no matter what your size !!! Enjoy that trip!!

 

[tiggspring]

Well it is really intresting that we were just talking about XMRV the other day. It is GOOD NEWS so read through.

I guess that there was a secound study that wasn't as promising as the first and they keep that a little quiet while they figured out why. Meanwhile several other reaserchers found that while XMRV was not found in their patients multiple XMRV related viruses were. IMHO this means that these cousin viruses could be the cause of CFIDS/FMS. It would explain why so many of us have a wide viriety of similer symtoms if we had multiple related viruses maybe some are more prevalent in different parts of the country just as lyme can be found up in RI/MA but not so much here in PA. It would also explain why some of us have more pain symptoms or nerological issue as each virus may attack an area of the body more visciously than another and it definately explains why we go up and down based on how well we are fighting it off. I am going to post the link below. One thing I want to warn you about they mention that some people are using Aids medication off label. Please dont get freeked by that. It does not mean CIFIDS is related it just means its viral. Many colds are viruses so don't be concerned. If you look at those of us with long histories and children we are miserable but its not killing us just making it very hard to function. I also dont know any of us with sick children. I worry about that but thats the mom in me and has no scientific or antidotal basis.

Bring this to your Docs!!! I hope this means we are looking at a treatment if not a cure in the next ten years. They already have the viral drugs now lets see if they work on our virus!

Study Links Chronic Fatigue Syndrome to a Class of Virus - NYTimes.com

Sending Pain free vibesand pixie dust to all

 

[tiggspring]

Try this agian

http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=1



PS GLAD TO SEE YOU BACK Eduke!

 

[Tinker'n'Fun]

 

[EDuke98080]

Try this agian

http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=1



PS GLAD TO SEE YOU BACK Eduke!

Thanks!

And thanks for the link. I have always thought that the onset of my problems was the very bad case on Mono I had as a junior in high school. I was hospitalized and it took me a year to really feel ok again. After that I have never been back to normal as far as ever feeling rested and not exhausted. They find the onset of so many autoimmune diseases to be caused by a virus or infection like the Celiac disease too. My stomach problems started shortly after that as well. Wouldn't it be amazing if they could treat these things with an anti virus and give us some energy back! Maybe a whole generation won't have to suffer!

Hope everyone is pain free!

Erika