Hello I'm New

[Pmadron]

I'm 47 years old and have dealt with fibromyalgia for about 12 years now. In the last 4 years my symptoms have grown and have gotten worse. I have been diagnosed recently with Sjogrens syndrome as well. There is not a day that goes by that I am pain free or exhausted. It is frustrating and depressing. I'm going to assume most everyone here understands this all too well. It's hard not to think there is something else wrong with me alot of times, especially when a new symptom presents. I try to think positive and continue researching ways to better manage my symptoms. I'm sorry anyone has to deal with fibromyalgia but I'm glad to be on here with people that get it!!

 

[JayCS]

Hi, and welcome!

I'm 47 years old and have dealt with fibromyalgia for about 12 years now. In the last 4 years my symptoms have grown and have gotten worse. I have been diagnosed recently with Sjogrens syndrome as well.

Ah, yeah, some suspected it, but turned out it wasn't.
In the fibro clinic the chief rheumatologist said it wouldn't make a difference anyway, I'd still have to see each symptom when it comes. And that's true for me. What about you? (My eyes are OK, but have to gel my dry mouth at night sometimes, and I've just been thinking my esophagus blocks from my Schatzki ring stricture might be increased by a dry throat, cos the bolus gets too viscous...)

There is not a day that goes by that I am pain free or exhausted. It is frustrating and depressing. I'm going to assume most everyone here understands this all too well. It's hard not to think there is something else wrong with me alot of times, especially when a new symptom presents. I try to think positive and continue researching ways to better manage my symptoms. I'm sorry anyone has to deal with fibromyalgia but I'm glad to be on here with people that get it!!

Yeah, we get it, you're in the right place! It didn't use to be that frustrating or depressing to me, except for a week when I got the fibro and then a lipid diagnosis. Cos I'm by nature very outgoing & (hyper-)motivated. Even the 3 jabs last year pulling me down long-term, and esp. this year CoV & quite a few unclear new symptoms, like you, I do get a bit annoyed and unmotivated and often don't wanna talk/see people - talking has gotten just as strenuous as physical activity anyway....

 

[sunkacola]

I'm 47 years old and have dealt with fibromyalgia for about 12 years now. In the last 4 years my symptoms have grown and have gotten worse. I have been diagnosed recently with Sjogrens syndrome as well. There is not a day that goes by that I am pain free or exhausted. It is frustrating and depressing. I'm going to assume most everyone here understands this all too well. It's hard not to think there is something else wrong with me alot of times, especially when a new symptom presents. I try to think positive and continue researching ways to better manage my symptoms. I'm sorry anyone has to deal with fibromyalgia but I'm glad to be on here with people that get it!!

We get it.

Any new symptom that occurs should always be checked out thoroughly with your doctor because while the tendency is to attribute everything to the fibro, a new symptom may be that or could be something entirely different and you need to know in case it is a) serious, or b) not serious and can be effectively treated. Never assume that new things are fibro-related.

Also, please check out my post of advice and try some of the things suggested because many people find that with experimentation they can manage their symptoms far better than they have been and have a better quality of life. It takes time and attention, and energy that we all don't exactly have in abundance, but it's worth it when you find things you can do on your own that will help.

Welcome to the forum and I hope we can be helpful to y ou.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Auriel]

Hello pmadron, welcome to the forum, ️ , aw 14 year is a long time to be in that type of pain. diet changes and nerve pain meds are what I use (I'd like to be without my pain meds) but the pains too much without them, I have cfs with mine too, there's been a few on the forum with sjogren syndrome too (this is interesting) anyway, hope you're having an ok day (despite the pain) 🕊

 

[Pmadron]

Thanks for your responses and the advise I have read on some of your posts. Although I dont wish fibro, Sjogrens or any other auto immune syndromes on anyone, I must say it is nice to be able to discuss how I feel with others that can relate!! Im going to explain some of my symptoms and would love any responses from others that experience similar things. I am currently taking hydroxychloroquine 400 mg a day. It does seem to help a bit with the stiffness in my ankles and feet in the morning times. I do still have stiff fingers in the morning. I also get numb arms and hands with pins and needles tingling in my hands during the night. My wrists are so weak as achy when I have to carry or lift somewhat heavy objects. I have a bunion or some kind of knot on the side of the base of my big ties that are starting to turn my big ties in toward my other toes. I also have horrible foot pain and back pain when I stand on a hard floor for any length of time. I seem to have migraines every week and it seems that her over this last year they are lasting longer as in 3 or 4 days at a time. I have imitrex for the migraines as my insurance doesn't cover some of the newer medications that have fewer side effects. I have gerd with hietel hernia that is quite large so I have taken 40mg of pantoprazole for 12 years now. It doesn't matter how much I change my diet to cut out any aggregating foods and beverages I still cannot go a day without a PPI pill for the acid reflux. I will say the most frustrating symptom I have is the debilitating fatigue. I have very few days that I feel good overall. The fatigue is there when I get out of bed on alot of days. Some days I can get up and do what needs to be done in the early part of day but I know by 2:00 I'm exhausted. I also have been diagnosed with ADHD. I wish I had the hyper part of it but that's definitely not the case. It's just that my mind is hyper and I can never stay focused. I take Vyvanse in the mornings and it does seem to help for about 4 hours only. I have figured out I am sensitive to glutens, high fructose corn syrups and alcohol. I do try to limit my sugars as wel because I know it definitely causes more inflammation all over leading to flares. I am a worrier type person so I have always struggled to relax and be more carefree. I used to be such an outgoing person when I was younger. I was in really great shape and much more confident. I feel like my endometriosis dx was the start of the downfall for me. I was 28 at that time. I just kept having problems after that. It was interstitial cystitis, then IBS, then the chronic gerd, I could go on and on. It was all part of the Fibromyalgia and Sjogrens. I have horrible insomnia. I can fall asleep but I cannot stay asleep. I wake up 5 or 6 times a night and probably end up with about 3 to 4 hours of sleep. I take trazadone to help fall asleep. I have tried other sleep meds such as Ambien but I have travelers amnesia and do such crazy things that I don't have any recollection of. Does anyone else with fibro or Sjogrens experience palpitations, chest pain and shortness of breath sometimes? And, what about tinnitus and vertigo? I'm sorry this is such a long post. I just needed to get all this out!! I am always researching ways to cope. I recently went through menopause and amnow officially in the post menopause category. I feel it really excaserbated all my symptoms and brought out new ones lol. I have accepted the fact I will never feel like I used to. It really gets to me when I have that occasional day that I am almost completely pain free and somewhat energetic. It's such a tease. I try so hard to think about what leads up to a day like that but I just can't ever seem to figure it out. Those days are far and few between. It's hard to even go to work alot of days. I have no motivation to get ready in the mornings. It's overwhelming to me just to get ready. Then I get so disappointed in myself cause I feel I am viewed as lazy. I feel guilty when I want to go lay down early in the evenings because I don't feel good or I'm so tired. I just can't commit to anything anymore because I fear it will be a miserable day or night for me if I went and then some kind of pain would present and I would have to struggle through with a smile on my face. Then I'd get home and be exhausted for days because of that! You all know the exhaustion I'm talking about! I'm just a mess but I know you all get it. I'm constantly trying new routines, sleep habits, good balanced diets, exercise etc. Sorry I was all over the place with this post. I'm sure I didn't cover everything...lucky you all!! Hopefully someday I will be able to better manage myself. I hope there will be some great discoveries sometime soon for beating these syndromes. God bless you all!!

 

[JayCS]

It really gets to me when I have that occasional day that I am almost completely pain free and somewhat energetic. It's such a tease. I try so hard to think about what leads up to a day like that but I just can't ever seem to figure it out. Those days are far and few between.

In my case these days/hours were/are because my cortisol and/or histamine is/are up.
My cortisol goes up from sleeping less, sometimes positive stress and my histamine goes up due to an intolerance reaction to food and any stress. These neurotransmitters override the pain and fatigue.
I often feel a little or lot feverish when that happens, and that or just watching out warns me not to use that pain and energy boost, because I haven't really got the reserves for it, it's a kind of light fight/flight positive stress reaction which is fun, but drains my mid term energy much more than in a healthy person. So I do usually use it, but less and shorter (for maybe 3 minutes elated fast cycling), and that works better. I does stop as suddenly as it comes up, usually by the next day at the latest, but now without a backlash.
I had to watch out for the cortisol reaction after Chinese acupuncture and realized it was causing more imbalance (like increasing insomnia) than sustainable help, so after 33 sessions at varying intervals tracking the reactions in detail, I gave up.

 

[Pmadron]

Yes I get the meds too. I really would love to toss a couple of meds myself but I simply cannot either. My hydroxychloroquine really does help some of my joint pain but not all. My midback and bottom of feet along with headaches and the soreness from a single touch is still usually present at some point through the days. Also curious, do you have little knots anywhere from a pea size to quarter size? Some pine felike bruises when I touch them and some dont hurt at all. They are on my arms and legs?

 

[Auriel]

Hi pmadron (I've got fibro auto thyroid) bunions are really painfully sometimes (they're partially why my going for walks are becoming an issue) mines just left foot big toe (don't know if I'm imagining it, but It looks like my foot is starting to twist under?) I'll only get an operation (I was told) if my toe twists over the other one (or pay £2, 900 private)
The back pain I get is low down (usually in the middle but can spread upwards to both sides, (which has been playing up last few weeks, been getting flaires for a few weeks too) I get why you like it here it's cathartic to have a chat, those little lumps might be something to look into (your gp might be able to do some tests, or know what they are + the cause) either way, happy you like it here ️

 

[doni]

I share many of the same symptoms. Even the miscellaneous lumps. I have them all over. Those and lots of bone spurs. I've decided my body just likes to grow excess stuff. Like yours, some are painful to the touch and others are not.
I also cannot stand on hard floors without pain in my back. I used to have terrible GERD my whole life (started preteen) until I had a gastric bypass which resolved the GERD. That was almost as much a benefit as the weight loss. I'm so glad I did lose the weight. I can't imagine how much worse I'd feel if I still weighed over 300 lbs.
I've started take Venlafaxine (I can't take Cymbalta as extended release meds don't work post-bypass). It's helped with some of the daily pain, but doesn't touch the fatigue. Even on days I wake up feeling rested, like you, by mid afternoon, sometimes as early a noon but usually about 2pm, I'm exhausted. I call it hitting my wall.

So, in sympathy and sisterhood of experiences, welcome to the forum.