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Living With Fibromyalgia - Online Support Group

New from Kansas

Hi all! Thought I would introduce myself. I’m a single mom to 3 and grandma to 1.

I’m not sure if what I am dealing with is Fibromyalgia or not as I haven’t been diagnosed yet. I am only now starting down that journey again. I tried over 12 years ago but got frustrated with the “nothing wrong with you” speeches and gave up. Since then I’ve just tried to live with it all and cope as best as I can. Sometimes that goes better than others, as I am sure you all know.
I guess I should share a little of what I am dealing with now.

Widespread pain that can be deep, sharp, dull, throbbing, burning or aching; in muscles, joints, etc. It can last for weeks or months, then seems to vanish for a time only to return in force. Areas affected include any and all of the following: Shoulders, upper back, elbows, wrists and hands, lower back and hips, knees and feet. What is affected one day may not be the next; or even later in the same day. I also deal with spasms in my lower back when things flare up.

Stiffness that varies in intensity and duration – sometimes it’s not too bad, other times I feel like I have 2x4’s instead of arms, legs and back. It’s there when I get up (many days I wonder how I’m going to get out of bed) and as with the pain it varies during the day.

Fatigue that is a near constant feeling of exhaustion; like I could sleep for days, even when waking in the morning after sleeping all night. The pain can affect my sleep too – either in getting to sleep or waking during the night because of the pain. The urge to take a nap can be overwhelming and I will many times end up giving in; on the worst days I’ve been known to nap multiple times and can still sleep that night.

Things like grocery shopping or laundry, even with help, will wipe me out for the rest of the day (and even the next couple of days too). Some days even just basic housekeeping is almost too much. What’s the fun of making the bed or washing lunch dishes if you need a nap afterwards or are in more pain?

Another issue I deal with is the ability to focus, pay attention and concentrate on tasks. It just is not there many days. I often feel like I’m wandering around in a fog; sometimes it’s just a light hazy fog, other times it can feel like I am swimming in pea soup. I used to say I had pregnancy brain or baby brain, but with the youngest almost 18 I lost that excuse a long time ago! Now I just tell people I have swiss cheese for a brain. Remembering anything can often feel like an exercise in futility. Forget remembering names, I’m lucky if I can remember, by lunch, what I had for breakfast – and that’s on a good day. If I don’t write something down, I’m not likely to remember it later and even then, I may not. (Anybody seen my grocery list? :blush:) And just because I make a list does not mean I will actually still have it in hand when I get to the store!

Another newer issue is numbness in both hands – sometimes affecting the whole hand, often just the last 3 fingers. The left hand is now constant (has been for a couple of months), varying in intensity throughout the day. The right hand is varying in frequency and intensity. It is not real painful, but rather a numb/tingling, pins and needles, feeling. It can be difficult to feel what I am doing, for example feeling the keys to type this, or feeling if I have a good hold of something to pick it up. Which just complicates things – did I drop it because I didn’t have a good grip or because my hand just gave out again?

I have noticed that certain things trigger the pain or fatigue more. If I get too cold, or if storms are moving through (I think it has something to do with the barometer) or if I am dealing with a lot of stress, the pain levels flare up big time. Conversely, the higher the heat and humidity, the more the fatigue levels flare (it also brings out the asthma more). Which means, that since I live in Kansas, I have yet to find a time of year where I feel really good. We are cold in the winter, hot and humid in the summer and have volatile weather year around. :blush:

I haven’t noticed a connection between my symptoms and food really. I never had major troubles with stomach/intestinal issues, etc. but was told by well-meaning friends that if I would just give up dairy or use goat’s milk or would give up gluten or caffeine that I would “get better.” So, in the last 7 years I have been dairy free (about 6 months), I have used some dairy (butter, etc.) and goat’s milk (about 4 or 5 years), I have gone completely gluten free (a year) and even gave up all Pepsi, etc. (5+ years). I saw no improvement in my symptoms with any of it, rather things have only gotten progressively worse. So, I gave up on all of it and eat what I want, in moderation.

I look forward to meeting ya’ll and learning new ways to cope.

Hey StrugglinginKs,
Welcome to Ben’s Friends.
That frustration with that line of ‘nothing wrong with you’ is REALLY common for many/most of us with rare conditions. It seems, rather than admit that their medical knowledge is lacking many medicos rather put it back on us, the patients. You say frustrating, I say infuriating. I just ‘LOVE’ being symptomatic so much and then to spend hours in a dr’s surgery gives me such joy, I battle through it all just for fun.
P.S. I am being cynical here. Who in their right mind would choose this???

One of the issues for many conditions is that common triggers can be very difficult to pinpoint. What maybe a trigger for an individual may have very little impact on another and I’ve found it’s the same with medications. What can be someone’s ‘key’ can of no use to another and this can make the whole process of finding some sort of relief extremely difficult and only adds to one’s frustration.

Merl from the Moderator Support Team

Welcome! Sorry to hear all the pain, fatigue,& fibro fog your going through. Lol on the grocery list, that’s why hubby & I share a list on our phones. It sure sounds like fibro & chronic fatigue going on with you. I hope your doctor is listening & taking you seriously. If not please find another doctor. May God send blessings to you.

I experience all of the above. I’ve been diagnosed with fibro since 1994. Diet has not made any significant difference, though for general health reasons my diet is vegan and all-natural. Moderate exercise helps a bit, as does meditation and yoga.

Thanks ya’ll for the welcome!

It’s nearly 2:30 am. I am so tired I can’t even see straight hardly but think I can get to sleep? LOL Decided to check this before taking my achy 2x4 body and trying once again to sleep. This is so NOT going to help the pain and fatigue tomorrow - I am going to be so dead. :sleeping::sleepy:

Well time to get off - sounds like storms are moving in, the thunder is getting closer. I’ve been asking my son since Sunday evening if we are getting anything and he kept saying the weather says no. I hate being more accurate than the weather people. LOL :roll_eyes:

Hello StrugglinginKs, all of your symptoms are the same as I have had when I was first diagnosed with fibro. Have you been to a rheumatologist yet? I think that would be your first course of action. I also worked with a naturopath to learn which supplements would help me. For me something that worked was ADB5+ made by Biotics Research. It helps put the adrenal gland back into balance. When that is not working right, you get the fatigue you are having. You can order this at Amazon for the lowest price.
When you see a rheumatologist, they will also check your B12 and thyroid to see if those are low. Those conditions can cause the fatigue as well. However I don’t think they have a blood test yet for the adrenal gland which is what the naturopath can help with. It’s a process to peel back the layers of the onion to find the best treatment plan for you. But try to push through to find the things that will work for you. We are here for you.

Just saw this, you seem a classic case of fibro…

Drs can help some, but a lot we have to learn to help ourselves…i have to stop and get physical therapy at times to keep myself going…also have you had your vit d levels checked , for years with supplements …i could keep myself going , but one winter my vit d crashed and i felt 95…now i have it checked yearly cause i have to stay near 50… to feel decent…i have to take 10,000 units of d in the winter months and at least 5,oooin the summer…

There are lots of self help tips we can suggest…but start with a dr…who understands fibro…

Lmd

Thanks for the suggestions. No, I haven’t been to a rheumatologist yet. At this point I am still trying to get the doctor to even look at my pain, fatigue, etc. Right now he is still lumping it all under the “it’s just part of the depression.” I have had my thyroid checked and it was good they said. He won’t look at other possibilities until at least Oct. because he believes it is just a result of the depression. So I keep dealing with is on my own. Seems like I would have that down after all these years. LOL But I have found each day is different and what worked yesterday won’t work today and may not work tomorrow either.