For all my fellow M.E. bloggers - first, thanks for your supportive kind words. It's so nice to know I'm not alone suffering this awful illness.
Second - I want to list a few symptoms and see if they sound familiar and if you've found anything that helps?
Symptoms are tough. There are so many M.E. symptoms that when I list them all I feel like a hypochondriac. It's no wonder that Dr.s may be prone to dismiss us with so many many symptoms and so few signs. I was lucky to be taken seriously in the beginning partly because I did have some signs of illness - I clearly had mono (tested positive by monospot) as well as a red raw throat, swollen lymph nodes, and ongoing fevers even a year after mono (which I still get fairly often).
As for symptoms, some come and go, some are always with me and they range from mild to severe - but most are mild (except fatigue, weakness, and the "ill" or "malaise" sensation).
The symptoms I want to ask about are:
- I've been having severe weakness in my arms and legs as well as a buzzing or what feels like an internal tremor. This tremor seems to be coming from the muscles in my arms and legs. Yesterday, trying to use my arms led to shaking as well. Has anyone else experienced this tremor? I actually felt it on the day I got sick (it was one of my initial symptoms).
- One of my worst symptoms that's always there and worsens during relapses -but one that I don't hear much about from fellow sufferers is an achy chest/flu ache that is very deep seated and dull. It hurts to take a breath, especially a deep breath. It is not a sharp or severe pain, just a really sicky, deep, heavy achy feeling. When I was a kid and would spend all day swimming in the waves (and breathing in water) I would get a very similar ache. I don't think it's anything like a bronchitis or pneumonia because I've had it terribly while at the Dr. and they've listened to my chest and heard nothing. Also, it is not accompanied by any coughing. I also feel like I'm getting air, just with discomfort.
That's it.
With everything going on in the world right now and all the people suffering the effects of the earthquake, tsunami, and war, it's hard to feel justified complaining. However, I find it so tough to make it through these long days of laying in bed. My existence seems so meaningless. I want to find a way to get outside myself - I feel so selfish - but don't really know how to do this when it's so hard to "do" anything with this level of energy and severity of malaise.
I have experienced the internal muscle tremor and muscle weakness. For me they were separate issues. The muscle tremor 'buzzing' seemed for me to be related to body memory and something trying to 'find it's way' out.
ReplyDeleteThe muscle weakness is an ongoing one for me and severely affects my mobility. It was much improved by HRT. Other medication can make it worse again though. It's worst when I am tired or get an adrenaline surge. I think I'm right in saying muscle weakness is a common symptom of fibromyalgia.
I don't get the chest problem, sorry can't help on that one.
It's hard to feel justified in a whinge when there's so much going on in the world, but you ARE ill, it's not like you are making this up or anything. Nothing changes that. You keep taking care of yourself, it's important ((()))
I do get the chest problem, it comes and goes but I usually only have it when I am at my worst in general. It also makes me feel like I can't get a full breath. The buzzing feeling is something that I have seen many people comment on. For me it feels like I have gotten stuck in an adrenalin loop. It switches on and stays on and eventually I get this buzzing and tremors. I have actually found that making an effort to relax my body and take deep slow breaths helps with this sometimes. Regarding leaving the house ... I totally understand your need to just get out .. I havn't been outside in over 6 months now, but it will happen one day I'm sure :)
ReplyDeleteThere are many people who have the chest discomfort you describe with Fibromyalgia. Just a thought. Also, have you had a chest scan just to be sure you don't have anything crowding up your chest cavity? That kind of thing wouldn't necessarily be heard by a stethescope. I've had tremors before, but it's usually when I'm completely wiped out. The buzzing sounds a bit more neurological in origin. Have you been to a neurologist to rule out MS?
ReplyDeleteAnd please don't feel like you're complaining. No, it's not a tsunami, but it's 8 years worth of unpredictable suffering. It's a slow torture and for an athletic extrovert that's a difficult state to manage day after day.
We all understand.
jenji
Hi Upnorth
ReplyDeleteI have air hunger, but not in the past before starting treatment for Lyme. Also have what I call inner shaking/tremoring all over my body. I have had it for years and it has been explained as from the Lyme for me and neurological in orign due to malfunctions of central nervous system, etc. It gets worse with adrenaline surges or pushing myself too hard physically.
So sorry you are going through so much right now with such a long relapse.
I wondered if when you go out to walk maybe if you walked a couple minutes then rested and then a couple more and then rested if that would make a huge difference? I have seen that work for many.
With thoughts and prayers for you ~
Renee
Thanks for the replies all. I think the internal tremors do have something to do with "using" my muscles because they get worse after I "do" something- most especially when I'm relapsed.
ReplyDeletejenji, that's interesting to hear about the Fibro. The one time I had it really bad (chest ache) I was at a walk in and I asked the dr. and he said it was fibro. I said "I don't have fibro" and he said well, if you don't, you'll get it beacause everyone with CFS has fibro"....and he didn't even listen to my chest...more personal experience that Drs are often a waste of time. Since the main symptom of Fibro is pain, and I don't have pain, I don't know where he was coming from - although maybe he interpreted the "dull ache" as pain...who knows. But I think I'll aske my specialist when I see her in April and perhaps have it checked ou.
Hey Upnorth,
ReplyDeleteI'm really sorry to hear you've gone south again, so soon...
Re the symptoms. I know EXACTLY what you're talking about with the buzzing... It's hard to say what this one is. The one time I had it the most extreme was the first time I was on Flagyl. I think it may be blood related... Some little bugger is in there somewhere... I actualy have it right now myself.
I also get the weakness in my arms, especially upper, and legs. I think with my arms it's neurological. This is sometimes accompanied by problems moving my arms/hands. THis could be neurological also or my doc told me in my case that when the antibiotics kill the rickettsia, when they are dying they attack the muscles???
I have found caffeine worsens my weakness in my arms...
I have had those chest issues with my mycoplasma infection, although it was accompanied by a loud cough at times ( a real head turner, embarrassing), especially when I bent down. Also with the mycoplasma I had shooting pains in my ears and sinus type pains. Sound familiar???
I'm sorry you only got a small good patch of late.
Thinking of you ((((( )))))) xx
hi upnorth, sorry you feel so awful still.
ReplyDeleteWorld events can help us gain some perspective, but I don't think it helps to compare or to dismiss our feelings/emotions about our own situation as unimportant, it is real and just because people are in worse situations does not change our own experience or ability to cope really. Not sure I am expressing that well.
Anyway, I get shaky arms when I have overdone it in general, or have used my arms too much. I also used to get leg shakes/whole body tremours almost daily when my POTS was untreated and at it's worst, so related to blood flow and pressure or nervous system perhaps. It is very infrequent now :)
I don't get the heavy chest but my ribs do get a lot of twitches/muscle ticks that feel as if they are in the muscles/connections between the ribs, both front and back, as if they are over-tired from breathing. Maybe it is related to muscle fatigue?
Keep resting and be as patient as you can xx
Hi Upnorth,
ReplyDeleteSorry to hear you are in the midst of a crash.
I get those tremor type things, but mine seem a little different than what you've described. Mine usually happen in the night and they wake me up. Mine also feel like they originate within my body. I have an adjustable bed with a built in massager and the first few times I experienced these tremor type things, I was sure I'd rolled over on to the remote and started the massager going on low....it was very similar to that kind of shaking. Not sure if that's the same type of tremor you're talking about.
I've never experienced that chest thing though (and I have CFS as well as fibro).
Hi Upnorth-
ReplyDeleteI want you to know I have (have had) all the symptoms you have commented on. I am just now coming off a post-holiday crash. My most severe since disease origin 6 years ago. I am finally able to get up and out a bit more than the past 3 months. But even as I am writing this, I have the gripping sensation in my chest. It comes and goes... as do all the symptoms you mentioned. I was naive enough to think I had conquered the illness, and wasn't listening to my bodies signals and ended up in bed for the past three months. Hang in there, you will come out of it! I just know it, I was feeling the same as you, and then things started to turn. I will put you in my prayers! I have been doing a lot more of that as of late.
S
Treya and Ashy, I think you're probably right (at least in my case) that the tremors might be related to blood/circulation.??? It's so frustrating having weird symptoms and no understanding why isn't it? Maybe it's infectious, hormonal, circulatory, metabolic/muscle, nervous system related hahahaha
ReplyDeleteAt home on the rock, thanks for the thoughts....Do you have restless leg syndrome. I know some people with it (and very occationally I get a little) but it sounds like what they describe.??
ReplyDeleteCFIDSarah,
ReplyDeletethanks for the supportive words. Good to know you've pulled out some from the post-Christmas crash/relapse. I know exactly what you mean by thinking you were getting better only to relapse - its' happened to me many times (esp. the first few years of illness). Thanks for commenting.
Take care
Hi Upnorth,
ReplyDeleteI don't think I have restless leg syndrome (not yet anyway).....but in addition to these body tremors that have awaken me, I have noticed ever so slightly tremors in my legs. They are barely noticeable yet, but I've been wondering if it's the beginning of restless leg syndrome (and/or if it will develop into that)