Symptoms Crash

[Machair]

I was doing ok until my husband had to work away from home, so I picked up all the house jobs and pet care during the week. Added to this my father has cancer and is very sick.

I was ok for three weeks, and then I started noticing that I was doing more silly things with the brain fog, like trying to cook a pancake on a ring without turning it on. Then a few days later I clipped my hip on the corner of a table and cut it badly.

Then after a month I woke up in the night with vertigo, breathlessness,my sleep gradually went from reasonable to hopeless, and the night sweats began again- drenching ones too.

The muscle pain got worse and the joint pain too. Then there were the dreaded headaches.

Then the worst thing happened- I had to go to The Post Office, which I did drenched in sweat. I had a sort of panic attack in the queue, which I think was the OI as I felt my heart racing, and I had to leave abruptly to find the nearest toilet for the dreaded bowel event- diarrhea. Has anyone had this with their OI?- it happens to me a lot especially if I stand in hot weather if I have recently eaten.

So here I am 5 weeks into a year of being alone in the week and my symptoms are back really intense.

A few weeks ago I almost thought I could return to a part time job, but it has only taken 5 weeks of this extra work to see an increase in symptoms to this level.

I've had this disease for 15 years now and have seen many relapses in that time.
Can anyone else identify with how these symptoms build from minor to horrendous as you take on more things?

I had a couple of social visits in the week leading up to the crash as well, which I now think added to the work I had to do, as well as the effort involved in holding conversations. I think this has to stop now as although isolating it seems to prevent crashes.

I guess it is a warning to us all to make sure we are really ready before we commit to something, as a mild day of symptoms doesn't mean that we are guaranteed to be on the road to stability.

So my pattern went from ok to more brain fog- more muscle pain- flu like- night sweats- panic attacks- more OI- diarrhea - breathlessness- dreadful sleep.
Does this ring any bells with anyone else who got themselves into a reasonable state and then went downhill. It has happened to me so many times, but in a good spell I forget about it and just plod on with minor symptoms not thinking they are a warning.

 

[sleepy237]

Firstly, Hi Machair, I am sorry that your Father is sick, watching a loved one suffering is very hard and I think that in itself can have an impact. Hugs. I think that change is hard to deal with sometime especially if you are dealing with a disabling illness. Are you having to do extra now that your husband is away? If you have picked all this extra up then maybe it has led to some kind of relapse for you. Maybe try to pace things out a little more. For the here and now I would suggest you rest up where possible and try gain back some energy. Wish I could be of more help. ~Sleepy

 

[justy]

Hi Machair, i'm so sorry to hear about your crash, so dispiriting when things have been looking up. The relapse that i am just (hopefully) coming out of now started 3 years ago after my husband worked away from home for 2 years, only coming home at weekends, i was doing pretty well at the time and thought i was invincible, then i caught measles and it all went horribly wrong.
I really can relate to your worsening symptoms, for me the night sweats and panic attacks and waking constantly are a sure sign, i havent been diagnosed though with OI so i dont know about the correlation. It sounds like you have taken on too much when perhaps you need to be consolidating. I know saying that doesnt help though. Like you i have started daydreaming about a part time job some time towards the summer, but then i worry that it could only take a little thing to set me back!
Please try and rest as much as possible right now. It ususally always helps me too to remember the things that helped before and go back to doing/taking them for a while.
Sending you hugs, take care. Justyxx

 

[Machair]

Thank you so much Justy and Sleepy for your lovely comments. It is so interesting what you say justy about the panic attacks, night sweats and waking all through the night. This always seems to be the way I go when I am in a relapse.

I never had panic attacks until I got ME, and had no idea what they were at first, but mine seem to occur when I am exhausted and doing more than I should. Is that your experience and do they affect your gut?- as I get scared about finding the loo when it happens, as they really seem to cause the runs if they are severe as well as palpitations which are really scary.The rest of the time my gut seems to be OK outside of these scary events. It does make me anxious though as I had a similar experience when I was in Arizona seeing my son last September. I had done a lot and it was just after lunch when I was standing in the sun- my heart started racing and I knew I had to find a toilet quickly.That's why I think it is to do with lack of blood, as it was just after lunch and it also happens when I stand in queues.

 

[justy]

Hi Machair, hope you are doing ok today. Yes i now only have panioc attacks on the odd occasion when i have been doing too much. Queues are a classic place for me too - i wonder if it standing for long periods, especially if you have just walked around or to the shop. When i feel like that i also often have to keep going to the loo. I also only started having panic attacks when i first got ill 16 years ago. I spoke to my doctor about it recently GP) and he said that he felt they where due to me being ill and that they where probabaly reactive or physical in origin and so not like a regular panic disorder or phobia. I couldnt believe he had such an enlightened attitude, usually they are trying to convince me that because i have had panic attacks that i am just suffering from anxiety.
Im going to keep going to see that one!
Take care and let us know how you go.

 

[Hope123]

If you haven't already, you should take a look at Dr. Peter Rowe's materials on OI as the situation you write about matches what he writes about (standing in line, hot weather,etc.). I've had similar events like you described in the past, having what seemed like a panic attack come out of nowhere while standing in line (racing heart, breathlessness, feeling sick in general, etc.). I don't have any history of anxiety or panic attacks and, as part of my prior job, had studied anxiety so I knew it didn't make sense for me. I calmed myself down by taking slow deep breaths, telling myself everything was OK, sitting down, and lowering my head below my knees. Later on, I talked to an ME/CFS expert who told me that it might a release of catecholamines (which are invovled with panic attacks) in response to the OI.

Peter Rowe is the 8th speaker here:
http://www.cfids.org/webinar/series2010-past.asp

The accumulation of little events over time isn't unusual either. It sounds like some people crash immediately after an events and recover over hours/days/weeks while others do a little more each day, accumulate a "debt' over time, and then crash hard, sometimes for years. There are people with both patterns also.

 

[invisible ME]

Hi Machair,

I am so sorry to hear about your recent crash, as well as your father's illness. I can definitely relate to your situation. I experienced a major crash recently after moving to a new town on my own (my spouse joined me a few months later). It was the first time since having ME/CFS that I was 100% responsible for all daily activities, groceries, cleaning, meal prep. etc. At the same time, I was attempting to go to school. Not good.

My crash was similar in many ways to what you've described. After years of "managing" my illness, I ended up in a situation that required much more from me than I was capable of. Symptoms that I hadn't had in years (or to a much lesser degree) came back full force. In particular, I now deal with OI (never knew there was a term for that until last year!), and vastly increased muscle pain, eventually leading to an FM diagnosis.

In terms of the OI, I've also found it's exacerbated by heat. Standing still is worse than walking for me. If I'm not able to sit (preferably lie) down when I feel that rushing, I try to at least move my legs. In my experience, OI can be similar to anxiety-type attacks that I've had, but without the emotional element. If that makes sense. While I don't have gut issues directly related to the OI, that was another symptom that flared up in a big way during this crash.

Now, I'm working hard on limiting my activity, and pacing. I was a bit shocked I could crash this hard after many years of improved (never close to good/normal) health. Oh well! Do you have much of a support system at all? Without family (or many friends nearby), I've had trouble managing. Probably a small/silly thing, but I've recently started paying someone to come in and do the cleaning (despite tight finances), and it helps immensely. Just having one less thing on my plate.

Wishing you well,

- invisible ME

 

[dannybex]

That is a LOT of stressful events that have occurred in your life Machair. I don't think we realize until it's too late how much impact the toll of the illness of one's parents or another family member can have on us who are already sick and trying to do more than we can handle already. Add to that the stresses of taking on extra stuff around the house, then bumping your hip, etc. That's A LOT for your body and your mind to deal with.

I hope you can find some help, some assistance, as you need to take care of yourself first.

 

[justy]

Hi Machair, just dropping in to say hi and see how you are at the moment. x Justy.