What is the course of your ME/CFS?

[colette1984]

Hi. Have been diagnosed with cfs for 7 years now. I was ok at that stage just mega anxiety but thought I was super ill so I rested a lot then I had little bit of a good period where I could work part time then decided to have a baby.

Since then, 4 years ago I have gone downhill, aside from the obvious (more responsibility and activity) I have no idea why im so bad now. I am no longer able to walk about outdoors, my body temp is super low (in the 35s, sometimes 34s, no idea if its always been that though?) and I get breathless alot.

I had a c section to deliver my child and I have been on and off a vegan diet, managed to reverse my diabetes and reduce my weight a bit and my blood pressure yet so ill. I think its thyroid but NHS no help and I have no money for testing private. Im at a loss now as what to do. I am no longer vegan but pescatarian

 

[JaimeS]

my body temp is super low (in the 35s, sometimes 34s, no idea if its always been that though?) and I get breathless alot.

Ditto, re: low baseline temp and breathlessness. If you search for my posts on "air hunger" you'll find a lot.

 

[Mel9]

There is another thread 'What's going on with my basal body temp?' too

 

[Marchesa]

this article (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3860797/) they discuss using clonidine, since a great deal of these issues are caused by spikes in adrenaline and noradrenaline. But with hypotension sometimes and hypertension other times, it gets thorny.

Do you know much about blood pressure issues? My blood pressure issues are weird and I have a hard time finding information that applies. I tried looking into the ncbi web site for more information but was promptly lost in terms not aimed at laymen.

On the pole, I think I have to say I don't really know. What counts as a relapse as opposed to several really bad days or weeks? I have gone months with little to no change, have gotten really bad for a while and then returned to around what I remember I was like before, and I have even experienced a near complete return to my pre-illness self for nearly a month. So I really don't know which box would apply to me.

 

[Marchesa]

There is another thread 'What's going on with my basal body temp?' too

I can't find this. Do I have to go to the main page with all threads to search? If so that would explain why I couldn't find it. Which forum tree is this in?

 

[Mel9]

Go to Home

Then write the thread title (or part) in the search (right hand top of my screen)

 

[JaimeS]

I tried looking into the ncbi web site for more information but was promptly lost in terms not aimed at laymen.

I'm there with my CPET stuff. I know I'd need to set aside a few hours at a time to take notes, maybe a whole workday, and I just can't convince myself that's worth it just now. It's a labyrinth full of strange terms.

Do you know much about blood pressure issues? My blood pressure issues are weird and I have a hard time finding information that applies.

Blood pressure variability seems common in ME/CFS. I say 'seems' because we talk about it here rather often. In particular, mine is so labile when I've been active that my device won't measure it; it presumes there's something wrong with the machine because it is vacillating so much. In one doctor's appointment I'd had to walk far to get to the doc and it did the same thing on the first reading, just gave an error message.

All of this points to potential issues with the autonomic NS, perhaps.

 

[Marchesa]

Blood pressure variability seems common in ME/CFS. I say 'seems' because we talk about it here rather often.

Is there a thread about blood pressure. I don't want to derail this thread. I have many questions.

 

[Marchesa]

Go to Home

Then write the thread title (or part) in the search (right hand top of my screen)

Thank you. I don't know what I was doing differently but it worked. Somewhat. I haven't found that specific thread but have been reading some of the others that showed up in the search. But I'm going to look again.

 

[JaimeS]

Is there a thread about blood pressure. I don't want to derail this thread. I have many questions.

Dozens! See the previous comment regarding the search box. There is also a google search if you find that you're using words that are common.

 

[colette1984]

Ditto, re: low baseline temp and breathlessness. If you search for my posts on "air hunger" you'll find a lot.

Thank you, I can not seem to find the posts though I typed in air hunger in the search should i look for another term?

 

[lafarfelue]

Thank you, I can not seem to find the posts though I typed in air hunger in the search should i look for another term?

I have run a search in Google specifically within PR forums for 'air hunger'. If you click on this link, it will take you to a list of PR forum threads about air hunger. I hope this helps.

(ps. It's a clean link to a Google search, I promise!)

 

[JaimeS]

I have run a search in Google specifically within PR forums for 'air hunger'. If you click on this link, it will take you to a list of PR forum threads about air hunger. I hope this helps.

(ps. It's a clean link to a Google search, I promise!)

Thank you, @lafarfelue !

 

[colette1984]

Thanks guys. So in about to buy the gupta thing anyone try it on here (this thread) xx

 

[place]

Sick for 20years but I improved and maintain 7/8 level: I had to take time off tweaking my med for pregnancy but am back on the horse. I feel like with each positive small change I can do more.

So maintaining with small gradual increases.

 

[crowquill]

"So in about to buy the gupta thing anyone try it on here (this thread) xx"

Yes. Helped stop the mind going over and over the same stuff but not with physical symptoms.

At the price of the dvds it is worth trying.

 

[crowquill]

In response to the original question, mine is remitting-relapsing but gradually improving until I fall below a certain level. Then it becomes progressive unless/until I can find treatments to take me back over the critical level.

Have been ill for 22 years and progressive for the last 3 :-S

B12 injections (self-injecting) have pretty much kept me alive.

 

[Stretched]

I’m 30+\- year PWC, thus my profile in summary fits the last ‘forced’ category. However, the first 5 years was stable with short periods of down time. The next 10 years were more periodic down times with recovery to baseline. The last 10 years have been progressive decline with short periods of remission with lots of rest, especially progressively worse the last 3 years.

Add to this that aging had an overall effect during the entire illness period.

 

[Zara]

My experience with almost 10 years of ME:
First 3 to 4 years I "recovered" somewhat with 6 weeks of rest. And after 4 years to recover took longer time and i crashed more. Now I notice worsening of symptoms and almost no recovery. I am not working anymore since 2 years. And my last "recovery" was in 2014. Last summer I developed new symptom with difficulty swolling, dryness in throath, stomac pain. Endoscopy showed lowgrade inflammation and change of epithelium. Got endoscopy done after taking 2 months pantoprazol. This helped some what. Other new symptom is a pressure on middle to rightside of brain. It feels like pressure and feels heavy. And my mental capacity is worse ever. Hence I would argue that my case is worsening.

 

[Sundancer]

I ticked the first box, seemed the best fitting

Started at 16, following a infection ( probably yersinia) needless appendix removal, AB. I conformed to the pediatric diagnostic of the Canadian consensus document. Wise old doctor told me rest, sleep as much as you need and diet ( no wheat/dairy sugar, some things I must take, like beetrootjuice and raw sauerkraut) Was couchbound for 3/4 of the day, after half a year i started to perk up and after two years I was well.

second episode at 27 was after delivery of son ( and being a week on an contraction inhibitor, because sonny wanted to break out early) for many years I struggled along with exhaustion, looking back it was a clear case of ME, but nobody told me so. I bought into the psychic thing but did not help any with the constant tiredness and pain.

third episode at 39, I was recovering from a period of much stress ( cortisol all of a sudden low) and bitten by a tick. Alert GP prescribed AB for 8 or 10 weeks. First week I could feel thing going better ( face half paralyzed was doing better etc) but after that I was getting gradually worse until I collapsed.
for about 10 months bedbound, twice a day I went downstairs ( with help of husband or son) once a day I walked outside with son. Severe POTS, could not be vertical for at first 5 minutes. So clear case of ME, severe to very severe. Was laughed at by both intern doctor and neuro doctor. Decided never to visit a specialist anymore.
But I recovered, after 3 years I was well, weller then I ever had been in my experience.

That lasted until 39, again a period of much stress followed by relaxation. Body sort of went fast south. So rest, good food, more stringent diet etc. Then at 41 I got a cold, followed by severe sinusitis and pneumonia. In the summer after that I've been to a specialized dentist, looking back I see that the dose of fluoride I got then has pushed me over the edge...
Then I crashed, half a year (very)severe, now moderate ( I'm 54 now). Living alone makes things much harder, I have to overexert because nobody is gonna bring me food/tea. especially the first year was very hard for that reason.

Now overlooking my history, the inability to handle drugs/xenobiotics seems to be ( one of the) roots