Fibromyalgia is a lot more than just pain. It is sleep dysfunction, cognitive dysfunction, fatigue and a lot of other symptoms but I am going to talk about the Pain.
Fibromyalgia: What is it– a post for ‘what is fibromyalgia’ if you are recently diagnosed.
Fibromyalgia introduction post– has posts I have made that will help someone recently diagnosed with all the information they need with their recent diagnosis
The pain of fibromyalgia varies from person to person
Some people have mild pain. Others moderate. Others severe. That is baseline pain. And we all have flare ups that knock us up the painscale.
But fibromyaglia pain itself is also variable. We have good days and bad days. And then FLARE UPS.
Now I used to have what I called moderate fibromaylgia pain
What I called moderate was a baseline of about 5 every day and flare ups in the 6-8 range.
I could Not do jobs that:
- Required standing all day
- Required heavy lifting
- Required repetitive lifting or arm movements
Basically, I could do a desk job and I had to find tricks around the brain fog to even function there. But I could work (not counting the chronic migraine attacks)… with just the fibro I could work with some ways to deal with the cognitive issues.
But I couldn’t stand for too long. Sit for too long in one position. Lay down for too long in one position. As all that causes more pain. So even with a desk job, getting up every so often for a walk helped. Or a stretch.
I could get severe alloydnia bouts in my back, legs, arms where they felt like they were on fire and clothing hurt against my skin, touch hurt against my flesh- the lightest of touches, and I had a hell of a time tolerating it.
I had severe flare ups that were short and severe flare ups that lasted longer in specific areas of my body. Like severe foot pain for a year once. And severe back pain for a couple years another time. That severe pain would flare up somewhere, last a bit, and then go away before my doctor could ever figure it out. But normal flare ups from like over doing it or the weather were more an all body ache and pain.
And man, if I didn’t pace I paid the price with a wicked flare-up that could last days to a week depending on what I did.
Pain changes and compounds with other conditions and now I would say my pain is moderate-severe with fibromyalgia
I still get the severe flare ups and I still get severe allodynia flare ups.
But now it is a baseline of around 6-7 with flares 7-9.
And I suffer with severe leg and foot pain. Wrist and hand pain. Both of which compromise my functionality in different ways. But the leg and foot pain is making it very hard to do minimal exercise like walking. I am trying to find some medication to reduce this so I can do some modest exercise because that is pretty vital when one is not working- to not lose muscle mass.
The pain is hard describe without adding in fatigue and muscle fatigue though. Every task you do, causes pain consequences. Any small task you do= pain consequences. But it also takes immense effort. And your muscles weaken Fast. They have no endurance. So basic housework has to be broken up into small tasks. So I will sweep one area of the house one day- so sweeping is a task that takes 3 days. And then stiffer moping takes another 3 days. Doing the bathtub is 1 day as it is exhausting. Rest of bathroom is 1 day. So you see how cleaning the house takes a very long time and when you are done you have to start back at the beginning because by then it it needs it. And some days are Bad Pain Days and you cannot do a damn thing. Some days are Pad Fatigue Days and you seriously cannot do a thing. So nothing gets done on those days.
I am trying to go for 15 minute walks a day. And it takes immense effort to do so with the leg and foot pain to do that. I can’t every day. And doing it is like climbing a mountain. It feels like I did a damn marathon. But I do it to try and strengthen my muscles and just try to endure the pain. I used to be able to walk further- but it used to vary wildly- some days I could walk half an hour before the pain began to amplify and other times 10 minutes before it did. Now the pain is There already and it is very hard to walk with it. It still varies. Some days I am hobbled by it and can’t really get around well from it. Other days I can go for a walk but it hurts.
With the baseline so high, everything hurts all the time. Just poke me anywhere and that will hurt way more than it should. My knees, feet, wrists, hands, shoulders, lower back, hips… hurt specifically way more than other areas. And those areas will get way more intense some days than other days. Sometimes making it very hard to walk. Or very hard to use my hands and arms. I have a lot of arm weakness I think due to that shoulder pain… so raising my arms to do anything I feel an almost instant weakness in them.
Everything seems so damn tender, or aches deep inside, or a gnawing pain… it is just constant. So when I do things it just amplifies that area of pain.
The constant neck and jaw pain I think are Not helping with my migraine attacks. But I can’t seem to reduce this pain. I do my neck exercises every day… and the pain remains. I do some jaw stretches and do my very vest not to clench my jaw but it … remains.
Other than Aloodynia I have severe Paresthesia now as well. It causes a lot of tingling in my legs. It can also cause patches of numbness. And it can get so intense it is quite painful. Like a crawling, itch of pain. It makes the skin sensitive as well. I have no idea why it is so severe right now but it has been for over a year now. Extremely intense. Sometimes so intense and painful I can’t sleep. I can get it anywhere, and I do, but in my legs, it is pretty much all the time and varies in how intense or painful it gets during the day and night.
These days functionality is very variable.
Some days I can do minimal house work and go for my 15 min walk.
Other days I cannot do any of that.
And this is a problem because that isn’t very functional at all. It makes it very painful to get around if I need to walk more than 15 minutes. Or do some activity. So I am really trying to work on increasing muscle strength starting with my walks, which I hope to slowly increase. Then once they are increased work up to an exercise bike. And do some physio exercises I know for my legs, core, and arm strength. All this will be very painful and slow but will every so slowly increase my endurance and will prevent muscle atrophy. Necessary, yes. Painful? Very much so.
But I need to increase my functionality or Manage it, anyway. It is pretty minimal now, especially when you add in my vestibular condition and chronic migraine attacks.
What I need to do is:
- Stay within my limits, but nudge them a bit
- Always pace; good days and bad- pacing is Vital
- Exercise to whatever extent I can and slowly increase to whatever pace I can
- Take supplements regularly. Magnesium, B12 (for Paresthesia). I also take D, Calcium, a Probiotic (for IBS-D), Omegas, and an arthritis mixed one.
- Rest as needed for fatigue and vertigo management
It is never the same day to day, like any form of chronic pain, I suppose. However, fibromyalgia is very complicated because it comes with so many symptoms that make it very difficult to treat and manage. With sleep issues and fatigue- pain can just be harder to manage day to day. And cognitive issues, the fibro fog, can be worse with more pain and less sleep. The pain alone is difficult to manage because of the fact that you must pace all the time and even when you do it can still flare up. Flare ups will knock you down for hours to days with pain that makes you non-functional.
You have to figure out what works for you to manage it really. And some medications can help with that. I was on slow release tramadol for a while. I am on flexeril right now. I used to be on lyrica. Can’t say any of them help too much. So I do what I can with what I can figure out. Comorbids are what can additionally complicate the issue. Comorbid pain, mental illness, and other illnesses.