[lizardlady]

Sabby, I was going to suggest a trip to your doc for a full physical to rule out something other than fibro. Then I saw your post about no insurance. So much for that bright idea.....

Could it be the weather making you worse? This winter has been hard for me. I can tell when a front is coming by the increase in fog and pain. About all I can do is manage symptoms... post-it notes to combat the fog, wrap up in my heated throw... be more patient with myself.. that sort of thing.

[fearfulfrog]

Thank you for the hugs sabby. I couldn't take it anymore having what I consider a filthy house ( OCD talking- everyone else had no problem with it). I finally gave in- if I am in pain anyway I might as well have a clean house! I did one room at a time- or parts of- I have one part of the bedroom to tackle the dust bigfoots under my husband's side of the bed ( bunnies are way to small). Of course this means my sewing gets put on a back burner, but as I am up @ 3:30AM because of night mares I might as well get one project done ( everybody else is asleep in the back of the house- they won't hear my machine! May end up in hospital by end of the week for strong SI; maybe I can find new pain relief while there!

[sabby]

Thank you lizardlady

I'm actually considering a trip to my doc within the next month or two. I'm saving some money for it and for some of the testing she might have me go through. I haven't had insurance for years now. This past year has set me back a few thousand dollars as I had a fall last June and broke my hand and elbow I've also been seeing an endrocronologist (sp) for my Type 2 diabetes as well....not cheap by any stretch of the imagination *sigh*

It could very well be the winter weather putting me in this funk and pain. I also know when a weather front is coming through before it gets here. It truly sucks! The hardest thing for me going through all this is that I am so hard on myself and at times catch myself thinking I'm lazy and I need to get over this and just do what I have to do. That sure doesn't help with the depression I'm feeling from the fibro....sort of adding salt to the wound with that negative thinking eh? I'm working on that too.

Until I get the appt. I'll just keep muddling on through I suppose, I mean, what choice do I have?

*hugs* to you and I hope you are taking good care of yourself dear one!

[sabby]

Ya know.....it really frosts my butt when all I do is hold my toddler grandsons for a few moments yesterday and today, my arms and shoulders are absolutely screaming in pain. It's just not fair dangit I feel like I lifted weights all day yesterday and it's hard for me to use my arms today.

I can't take anything strong for pain as I am working today. All I want to do is crawl under the covers and sleep all day......well, that's not going to happen *sigh*

[Jewels]

(((((((((( sabby ))))))))))

sorry to hear you are that sore sabby...i know it sucks big time to even try to give a hug to someone...let alone have children on your lap...

I hope that you get some relief really soon...

Jewels

[Jewels]

boy, i thought with a little bit of spring weather here i would feel a bit better, but it seems i am feeling worse...the pain in my joints as well as my muscles is really high now, and the Lyrica is only managing some of the pain...I can't wait until the real spring weather gets here and things start warming up...

the majority of birds are back, and this year I want to get a bird feeder to be able to watch the birds come and grace us once again with beautiful colors...

how is everyone else doing these days???

Jewels

[sabby]

I hear you Jewels....sorry you are hurting hon.

I woke up today with very painful joints from my shoulders to my elbows and fingers (my knees always hurt no matter what LOL). Usually I'm only in this amount of pain with a cold front and bad weather....go figure

Hope you are feeling better very soon!

[lizardlady]

Hi Jewels! Thanks for asking. I'm actually not doing to badly. Got some fog going on, but pain is only about a 3 lately.

[estoyaqui]

When I take Lyrica, the pain is manageable, when I don't, I cannot even be touched. Lyrica is so expensive, I have no insurance and my husband has told me he will no longer get it for me. I cannnot work, I am not on disability, I do not qualify for Medicare. I could try Medicaid, if only he would actually give me the real numbers to our inconme, because, although his work is sporadic, he still does work. He doesn't have a care in the world as far as his health goes because he is over 65 and has Medicare! I wish I had the nerve to just pack up a shopping cart and live on the street. But I am not that far out yet. I try to take only one Lyrica a day, but I have to take two. Otherwise, there is no effect! My life sucks, and I am the one that got me here. I escaped Castro's Cuba with my family when I was 10, my father died at 11, and I have been a suvirvor ever since. But for the past 35 years this husband has controlled me mercilessly and I have not had the guts to do anything about it because we live in a city where I have no family and all the friends I have tried to make throughout the years, he has demeaned behind their back and I cannot look them in the eyes anymore. I have give up on a lot of things. Mostly, I have given up on myself. I hope my cancer comes back so that I can just go. Fast! I cannot take it anymore.

[sabby]

Hello estoyaqui and welcome to Psych Central.

I'm so sorry to hear of your difficulties with obtaining medication for your illness and the difficulties with your spouse. It sounds like you are truly depressed and who could blame you with what you are going through.

I think there are a couple of things you may be able to do to help yourself with the medication issue and possibly your home life as well. If your city has any mental health clinics, you can go to them and ask for assistance in finding you low to no cost therapy through them and then get some help in getting your medications. They have social workers who can help you find ways of assisting you either through state programs/Medicaid/free to low cost drugs from the manufacturers. Since your husband is not forthcoming about your family income, there may be ways of getting that information without his assistance (I'm not completely sure of that, but it doesn't hurt to ask!).

We have a great member here who went to a lot of trouble to put together a thread about obtaining low to no cost medications. Here is the link to that thread. You may find it useful! http://forums.psychcentral.com/showthread.php?t=153805

I wish you the best and please keep us updated on how things are going.

Take good care!
sabby

[ravensong333]

I'm glad I 've joined PsychCentral now . I've had fibro for just over 30 years . I ended up haveing it real it's ugly head due to a motorcycle wreck in 1981 , just one week after my oldest daughter was born . It was my first time being able to be away from home . My brother and I were rear ended by a drunk driver . The drunk was convicted of his 9th dui !!! He got a slap on the hand ... I came out of it without a scratch . I began to have pain in my back which got more and more severe . I thought it was just having kids at an early age . I was married when I was 16 , he was killed in 1989 9 years after we were married . Anyway needless to say I've found that my late mom and probably my grandma both had fibro too . I think after living with this pain for 30+ years I can answer questons on herbs and on how to deal with those nasty doctors who begin the visit with " WHAT MAKES YOU THINK YOU ARE REALLY SICK???"

[sabby]

Hi ravensong and welcome to PC!

So, you think that the motorcycle accident brought on the fibro symptoms? I think that's an interesting thought. Would love to hear more on this as I too, was in a motorcycle accident in 1976.

I have been through MS testing (a number of years ago) and I've also got type II diabetes and was finally dx'ed with fibro 2 years ago. Back during the time of the MS testing, I also saw a sleep neuro and I mentioned to him about fibro and he totally said no way blah blah blah. Years later, another neuro from the same office dx'ed me with fibro. Go figure *sigh*.

Anywho, I'm glad you are here and I look forward to seeing you on the forums.

Take good care!

[HumanTouch]

Hi,

I wanted to see where everyone goes to find support for fibromyalgia? What other forums beside this one do you use?

Thank you,
Colleen

[fearfulfrog]

Welcome humantouch. I had a support group locally but it met @ night and I am unable to get there, now there is no group in my area. I tend to rely on FMAWARE website/newsletter to get links to info.

I just got back from the pain clinic, I had to stop my Mobic ( anti-inflamatory) because I was unable to take anything for break-through pain while on it ( like aleve for cramps); With Mobic I was a 3 on a pain scale most days, now I live @ 6. I also had to stop taking Lyrica that I had been on for 3 years- my pdoc felt it was contributing to my negative thoughts. Now I only have a muscle relaxer to help with sleep and can take during the day as long as I don't want to do anything that requires too much thought ( too sedating). I inquired about a longer-acting anti-inflamatory such as Enbrel- but alas, this class of drugs isn't approved for Fibro, so unless I find a study that is being done I can't even try it!!

If anyone wants to help further research- please go to patientslikeme.com; it is a site that gathers information and demographics about people with Fibro; CFS etc; researchers can gather information to send out surveys to people who meet specific critiria so that they can try to find new ways to deal with everything. I get e-mails every so often that ask me to take a short survey, it gives researchers feedback and allows them to get grants to further treatment options. So far I haven't found the "magic" combination for my self, but by continuing to share my story more people become aware and new treatments will come.

[ravensong333]

I finally got some good news at my last doc appointment . I got there thinking to just get refills on meds . He gave me cortzone shots in both knees . He does it drastically different that my last doc . The last doc just gave one large shot in each knee and I could barely walk for two or three days . My new doc here in Washington give first a shot to numb the inside of my knee this way when he gives me the cortizone I don't feel anything and I was up walking with zero pain the very next day . He's also going to get me set up with a local hospital so I begin having epidurals in my low back to help ease the 8+ daily pain I'm every day .
Humantouch , I am a member of several support online . I tried a fibro class one time but they got on to the subject of reliegion , I'm a Witch but I don't ride a broom or hurt others . The momment I was honest the entire group gave my daughter the cold shoulder which hurt so much that I've never even looked into local support groups . I've had more support and help and love in the groups I belong to online than I've ever had with person to person groups . I have PTSD too which makes it really hard to deal with even snall groups of people . So for now I'm doing better right here in this computer

Hi, I'm new here and was just diagnosed with fibro last week. Also dealing with type 1 diabetes, hypothyroidism, and arthritis, in addition to psych issues. I started taking a small dose of Savella last week and it really seems to help, both with pain/fatigue and depression. Anyone else here on Savella? I hope I didn't post this to the wrong thread. If so, just let me know...

[ravensong333]

Hi Jane I'm Ravensong , I think there's a introduction topic but I don't know where it is . I've had fibro for 30+ years , if you have questions I know you'll get good answers here . How severe is your fibro ?
I'm also checking in lol . I've had a pretty great past 3 days . I'm in the middle of doing the embroidery stitches and pictures by hand on the quilt blocks for a crazy quilt I'm making. Normally due to muscle spasms in my back and severe pain in my wrists when I try to sew I haven't been able to sit and work for more than a few minutes every few days . However my doctor put me on a new muscle relaxer . I woke up Monday morning with zero pain in my wrists !?? I've been able to work for 2 or 3 hours at a time on my current quilt block
Jane if I can help just let me know .

Hi Ravensong, Thanks for the reply. Wow, 30 years! I can't imagine what that must be like. I've had various symptoms for 4 years, but kept trying to attribute them to other things (thyroid, running injuries, sitting at the computer too much…). But I finally found a great doctor who correctly diagnosed me. I'd say my fibro is not too severe, but it has kept me from doing a lot of things I want to be doing.

I've asked others this question and haven't gotten an answer, so maybe you'll know: Does it get worse as we age? I'm 40 and just wondering what it might be like at 60 or 70?

Anyway, I'm glad your new muscle relaxer is working!! Yay!

[Rhiannonsmoon]

I share the time frame with Ravensong. I was 19 when it hit me, I'm almost 52 now. It's dreadful to go through a flare, I just had one end a few days ago. Very grateful for that.

[Jewels]

Ive had fibro for so long that it's hard to determine when i first had got the diagnosis...I think I was 23...which would make it 33 years ago...now that I am on Lyrica 4 times a day my pain is tolerable...and I haven't had anywhere near the flares I used to have before. But there ARE times that I do get flares when even the Lyrica doesn't help me. Then I can't even get out of bed without a lot of help. and it is crying time because the pain is so exquisite. I'm supposed to cancel my p.t. and reschedule it because of my foot being in a cast and I can't put weight on it, so what is the use of going to the p.t. appt? Just wanted to say hi and let you know im still alive and sort of well. glad to hear you are past your flare rhia...is good to see you again!!!

[new2ar]

This is a wonderful thread! I have fibro, M/E (used to be called Chronic Fatigue) and osteoarthritis. I've been very fortunate to have doctors that understand but I've just moved to a remote area of Arkansas and there are no rheumatologists here. Since I've found a family MD that's willing to write the rx's for what I take, I'm not going to bother trying to find a rheumatologist.

I've been living with fibro and M/E for 8 years. I've done tons of research and nobody really knows what causes these diseases. They have learned it may be a traumatic experience...either physical or emotional...and they know that the genetic make-up of those who get sick is different from those who don't.

Having gone through so many different meds and having none of them make me well, I've learned to pace myself and listen to my body. I can no longer work and only have a few hours in each day that I can be physically active. So I decide what I'm going to do each day, get it done if possible, and just stay put the rest of the time. It's been very hard but I'm gradually increasing the number of hours a day I can be active and that's a big plus.

[scooby0407]

I was diagnosed in 2003 by a rheumatologist but I have had the pain since 1995. All she put me on was Neurontin and Flexeril. The flexeril helped but around the same time I was put on Abilify and about a year later I had to go to ER cause I was partially paralyzed on one side. Turns out it was from mixing the Abilify and Neurontin. Now, I am on nothing for the pain. Don't have insurance to see a rheumatologist and my psychiatrist says its not his problem. But I have found that heating pads and ice packs are better than nothing. I am still working full time in a warehouse but I am getting to the point that I am getting very sensitive to temperatures and just the slightest pain about kills me. No one understands, either, they think I am just being a baby about things.

[cutebagaddict08]

Hi Everyone- I think it's great to have a thread like this....it's hard to find 'groups' directly related to fibro.

I was diagnosed about 6 months ago after many doctors, tests, etc. I am on neurotin. I also have alot of issues with allergies and I have PMDD. Some days are good fibro days, some are not. Sometimes, I feel so achey that I just want/need to lay in bed all day and watch my favorite shows. I work in the healthcare field, and I think my job is physically and emotionally draining for me-it causes me alot of stress, and now more stress since the fibro diagnosis.
Not alot of people understand what I am going through, like my family and friends. My husband has a hard time grasping it also., which stresses me out. lol.

How do you guys deal with the stress of work and such???

[fearfulfrog]

Originally Posted by Anonymous39291

Hi Ravensong, Thanks for the reply. Wow, 30 years! I can't imagine what that must be like. I've had various symptoms for 4 years, but kept trying to attribute them to other things (thyroid, running injuries, sitting at the computer too much…). But I finally found a great doctor who correctly diagnosed me. I'd say my fibro is not too severe, but it has kept me from doing a lot of things I want to be doing.

I've asked others this question and haven't gotten an answer, so maybe you'll know: Does it get worse as we age? I'm 40 and just wondering what it might be like at 60 or 70?

Anyway, I'm glad your new muscle relaxer is working!! Yay!

Just thought I would chip in- I have been diagnosed with fibro since 1996- so 15 years, I have gone downhill despite interventions- HOWEVER My fibro came to light after an auto accident that caused SEVERE injury in my back and have already had one surgery to help and may be facing #2 later this year, also I have hosts of other issues. A great website regarding co-mordity of diagnosises is : patientslike me.com They collect info from around the world and put it all together- to help both patients- to see what are other experiences and also researchers ( I am in numerous online follow up studies) to find out what is working and what MAY work. I STRONGLY suggest ANYONE with FM; Celiac disease; TMJ Disorder etc to check out patientslikeme's web site and enter your demo graphics- they DO NOT share ANY info about you globally ( if you fit the profile of a study they send you an e-mail to reply to if you are interested, then you fill out a prelim info with that particular research group if YOU want) I am big on privacy and have not had any issues with them sharing more than I want them to share. Every step of the way they ask if you are willing to share what.

[fearfulfrog]

I am going to try to figure out how to link the : patients like me web site onto this thread- I am NOT very computer savy with that- if anyone is and it doesn't cause issues with privacy to share the links I believe it would be helpful!!