Please help, I'm in a predicament

[KateUK]

Please help, I'm in a pickle, and really at a loss for what to do.

Short background - long term severe ME, house bound for the past 13 years, stable at around 10%. Always had gut problems from onset 20 years ago, but (just about) manageable.

In July this year, something went wrong with my digestion. Following a stomach bug (I assume), something remained 'broken' in my gut and I lost the ability to eat solid food. I sustained myself on bone broth and coconut water by the spoonful, managing only just to keep it down, eventually progressing to chicken soup and eggs, but then I broke again and was back to liquids only. I've tried slippery elm, aloe vera, sauerkraut juice, and the first stage of GAPs intro. Consuming anything lead to considerable GI tract pain, shaking, sweating, and basically feeling food poisoned. I've had persistent, chronic diarrhoea and abnormal heart rhythms throughout.

The whole process has taken five months, with stool samples and blood tests normal, IBS thrown about, and general procrastinating by my GP. Eventually, I paid to see a private gastroenterologist who gave me the line of 'knowing nothing about ME', and shunted me back to the NHS.

Finally saw a NHS gastro three weeks ago. She was very good, took me seriously and marked me 'urgent' for a CT scan, endoscope, colonoscopy and also a referral to cardiology and dietetics, all of which I'm waiting for.

However, following the hospital visit for just a consultation (it was extremely hard to get me there), I have crashed to the worst extent I've ever experienced.

I'm bed bound and I feel I cannot breathe; there's a pressure on my chest, and even with oxygen (I have a concentrator following a stint at Breakspear five years ago), I feel utterly suffocated and oxygen deprived. There are pains and strange sensations all through my trunk. My limbs are numb and tingly, my body's twitching and constantly shaking. I'm too weak to stand, cannot wash or visit the toilet. My heart's pounding very uncomfortably. Noises, light, movement, touch are excruciating. MCS, ENT symptoms and allergies have gone through the roof, sinuses and eyes very sore. The slightest movement sends my world spinning. I'm very, very sick. My head feels inflamed and I have new depression/mental disturbances. I literally cannot cope with anyone being in the room with me. My whole body feels like it's shutting down and I've lost all control over it. A darkened room is all I can cope with but the struggle I'm having to breathe is terrifying me.

I'm managing to eat one jar of baby food at night after sedating myself with zopiclone. This is the only time I can take on any liquids, too. I've lost three and a half stone and am still losing. I'm deteriorating quickly, and I don't know what to do. I'm genuinely frightened that I'm dying.

I don't know what to do because I cannot see how I can possibly contemplate hospital again, whether for tests or otherwise. I honestly think it will kill me, I cannot envisage being moved at all. But I also know I cannot continue like this, unable to eat. I just cannot manage what needs to be managed in the grips of this level of rapid deterioration, and can't cope as it is, let alone risk crashing further. Catch 22 .

If anyone has any advice, words of wisdom, experience.. please help. I know forums don't replace medical attention, but I'm at a loss for what to do.

Thank you for taking the time to read.

 

[anciendaze]

You are describing a medical emergency. This is not something you can deal with alone.

I'm somewhat concerned about the use of zopiclone, and suspect you may have been using this in increasing doses for some time. If you are getting withdrawal symptoms, and are already at the point where increased doses are scarcely adequate for sleep, something else is indicated right away. Many symptoms you describe resemble problems with benzodiazapines, and we've had some real lulus of problems turn up here. Don't keep doing what has worked up until this point. Your body has changed tolerance. Some people have actually needed anesthesia to get through withdrawal, as if they were addicted to opiates.

If I am wrong in my guess about the cause, you have a serious medical problem of a different nature, and should waste no time in having professionals find it. We can't be there right away, and can't respond when you need it if we are sleeping at the time. Get someone who will answer the telephone when you need it. To repeat: this is not a time to go it alone.

Temporary advice: keep taking fluids, do not allow yourself to become dehydrated or to lose electrolytes completely. You may need IV saline and glucose to sustain you until your gut starts working properly.

 

[KateUK]

Thanks Anciendaze. Zopiclone I have been on for a number of years, but have taken care to never increase the dose. I don't use it for sleep, admittedly - I use it because it gives me a break from some of my symptoms for an hour or two before bed each night, and it's the only break I ever get. I'm aware that it could be causing me problems, but cannot contemplate starting withdrawal while I'm in this state. I wish I'd never gone on it, but at the same time, my symptoms are so severe and constant that it has also been a life saver.

I have had a doctor visit tonight, who has checked my pulse and oxygen saturation levels and was satisfied I didn't need immediate assistance. I do recognise that I rather desperately need help. I'm just very severely affected and can't find a way to solve the problem of the extent to which hospital visits devastate me .

 

[anciendaze]

I'm glad to see agreement from people I respect. Remember, we are all working with incomplete information, and most are not medical professionals. There are other pitfalls of giving advice in such situations I'll mention, but we've had enough concern for people in the past to find a way to intervene remotely when we could figure out how. In at least one case this saved a life.

One problem I've run into with other people who got into a similar crisis is that they didn't tell us about over-the-counter medications they were taking, thinking these were irrelevant or harmless. One example from people who also had allergies and sinus trouble like yours was the antihistamine Benadryl (diphenylhydramine). At low doses this acts as a sedative, suppresses nausea and aids sleep (for many people.) At higher doses it results in some of the symptoms you describe: racing heart, agitation, nausea, etc. Many people who end up on this forum are unusually sensitive to this. I know someone who gets a powerful effect from half of a 25 mg. tablet normally considered a small dose of a harmless medication. This is when she is healthy. When she is sick I don't know what will happen. Just because it is safe for others in most cases does not mean it is safe for you right now. Tell your doctors everything that goes into you, even natural supplements, vitamins and OTC drugs. Even things which are harmless by themselves can result in weird interactions. Simplify the situation, don't complicate it.

Above, I tried to impress on you that this is a real medical problem that requires immediate action. At this time I feel the need to tell you that several others on this forum have pulled through similar crises. I'm not at liberty to speak for them, but I will say that they now understand that the situation, though dangerous, was not as hopeless as they imagined at the time. Myself, I have not been in the exact situation you are enduring, but I have survived a sort of unintended graduate course in side-effects of medication. Stick around here until people know you, and you'll learn there are plenty of others who have come through crises.

 

[taniaaust1]

hi, I hope you pull throu this.

Ive been in that place too where I was so bad that I was at risk of dying from this illness and thought I would, yet couldnt get any help (doctors had previously dismissed me as "we cant treat CFS"). . In my case I wasnt eatting and hardly drinking at all, not due to gastro issues thou but of the ME being so bad that I couldnt feed myself much of the time (too weak to hold a fork and shaking) or get up to get myself food and was sleeping 23.5 hrs per day and not able to be awake any more then that. I should of been on a drip due to hardly eatting at all (one time I slept for 3 days without waking)... Im so lucky that that 9mths of hell didnt kill me.

Like yourself I couldnt even stand or walk to get to the toilet (used to take 3hrs or more to crawl there dragging myself with my arms, in between having to sleep along the way in the crawl).

I dont know what to say to you but I completely understand how you cant go to the hospital or bear even someone in the same room as you (I was the same.. I couldnt tollerant any noise or movement around me or I'd get even worst). I ended up having to resign myself to possibly dying at that point of time. Im sure being in a hospital probably would of killed me with the severity of my condition and Im lucky to have gotten throu that and came out the other side.

Im wishing you the best, keep your hope as some of us do recover from an extremely severe state to a less severe state and do whatever YOU think is right for YOU even if it may seem crazy to others. **hugz**

Im wondering how you are getting by? Is someone looking after you some? (when I was very bad my child became my carer.. and carer of my younger child and was bringing me drinks, food, potty after I stopped attempting to crawl to the toilet, a friend would shop and leave the shopping at the door for my child to put away as I couldnt have anyone else inside the house etc).

I would of died if I didnt have another there (even if she was only 9-10 years old at the time) as I just couldnt look after myself in hardly any way at all.

I are rather concerned on hearing about you and the severity of your symptoms as I know from experience that paralysis states can often kick in too when one is this severe so in an emergency you may not even be able to seek help. Sorry my post is long. I wish I knew something which could help. I cant suggest hospital when there is no ME experts there and people like us with severe ME are treated horrifically and die there.

Can you contact that well known ME specialist in England.. Dr Sarah Myhill and ask her for help? (I found her approachable when I contacted her in the past). If you cant eat, you need some doctor to some how arrange IVs for you. Those other appointments are probably better done if you can some how stabilise yourself first.

(Im currently putting off some testing as I know that its far too risky and quite likely to crash me further and Im currently at such a low level in which I cant allow that to happen. I'll be in BIG TROUBLE again if I crash any further again)

 

[Beyond]

What things have you tried for your gut beside these? Lots of people have had success with probiotics (the ones that actually work ) I have tried a few that don´t lol For example, is somewhat common that CFS people have a defficiency of E. Coli. I have found that 6 capsules of Propolis Y.S. stops my intestinal inflammation.

 

[taniaaust1]

There is hospital formula liquids which can substain a person giving one all the nutrition one needs. At one point my CFS specialist told me to buy one of those (it was sold at pharmacy) to improve my nutrition and meal missing issue. (the only issue is I became intollerant to it after a short time so had to stop taking it). Sorry I cant now think what it was called but I do remember the company was "Pharmafood". umm it may of been called "IsoWhey Complete"

 

[brenda]

Kate

I would seriously consider ringing 999 and going into hospital. Even if it really stresses you, you will feel better once you are hydrating. I was very very ill at one point and quickly lost 4 stones and confined to bed, BUT I was drinking and I could breathe. Having trouble with these two things are what constitutes a medical emergency and you could lose consciousness. Talk to someone medical anyway.

 

[user9876]

In terms of going back to hospital for tests the NICE guidelines do talk about the need for planned admissions for people with severe ME when a number of tests are necessary. So you could ask about an admission whilst they do all the tests that the consultant asked for.

1.9.1.5 Most people with CFS/ME will not need hospital admission. However, there may be circumstances when a planned admission should be considered. The decision to admit should be made with the person with CFS/ME and their family, and be based on an informed consideration of the benefits and disadvantages. For example, a planned admission may be useful if assessment of a management plan and investigations would require frequent visits to the hospital.

You could also ask for hospital transport to get you there and back. For people with mobility difficulties and health issues they can provide a 2 man crew ambulance where you can lie down during the journey and they will take you in a wheelchair to and from the ambulance. If you can't manage stairs they can even get 4 people to carry you up and down. I think your GP would have to approve such transport.

 

[xrunner]

@KateUK

a) I'd call 999 or go straight to the A&E of the best hospital in your area, whichever is easier for you, to make sure your breathing and chest symptoms are not due to lack of electrolytes or nutrients. if you mention your gastro symptoms they might also carry out the tests you need in that area.

b) Rule out that any meds or supplements you take are not not cause paradoxical reactions, sometimes these are delayed. Diazepam used to do that to me and it took me a while to discover that it didn't help. These and other environmental factors might contribute to the burden on your immune system hence your increased reactions and allergies. (When I had MCS and was going downhill due to problems with smells and eating what helped was to stop all meds and supplements and sleep in my living room (the only room where my reactions were milder) for about a year. I think that alone helped reduce to the burden on my imm. system.

c) If that still does not help, treat the MCS (have you tried low-dose immunotherapy?)

For short-term relief of the worst MCS reactions (tachycardia, chest pain, breathing etc), something they taught me at the breakspear, I used to take 1/4 of teaspoon of Tri-salts with a teaspoon of Ribose in a glass of water.

ps: in the past whenever I went to A&E, which happened quite a few times, I never mentioned the ME or MCS factors because I felt they might negatively influence the doctors' opinion.

 

[Hip]

What about taking stomach acid supplements with your food, like betaine hydrochloride tablets?

Your stomach and digestion difficulties may well come from a lack of stomach acid, so that you cannot digest food. Low stomach acid is very common in ME/CFS.

Betaine hydrochloride tablets convert to hydrochloric acid (HCl) once the stomach (hydrochloric acid is of course what the stomach normally secretes to digest food).

If possible, buy a betaine hydrochloride tablet that also contains digestive enzymes as well, as your stomach may also not be secreting enough digestive enzymes as well.


You could also try drinking some lemon juice from a lemon, or vinegar, when you eat, to help boost stomach acid levels.

 

[Tammy]

Kate..........I am so sorry you are going through what sounds like hell. I have been there. From what you have described I agree that you should be in the hospital and it astounds me that no one has admitted you. Please do not try to hold on by yourself........you should be monitored in the hospital until you are more stable. Sending much love your way.......you are not alone.

 

[caledonia]

If you're having constant diarrhea, you can be low in fluids and electrolytes. That can cause heart arrhythmias.
If you're not eating, you're probably also missing a lot of other nutrients, which can cause various problems.

Taking meds at this time at normal doses could also cause problems with overdose or contradictory reactions.

I think IV fluids, and glucose may be indicated to get you through until you can get your gut fixed.

If they NHS hasn't found anything, they're not doing the right testing. I have links to a couple different stool tests in my signature, but that would take a few weeks to get results.

I'm trying to think of something simple you can try without testing, just to hopefully get some relief.

A general gut program would be probiotics (the kind you have to keep in the fridge is best), digestive enzymes and betaine hydrochloride to raise stomach acid. Take digestive enzymes and betaine with each meal. Probiotics can be taken once or twice a day.

=-==-=-=-
These are the side effects of Zolpidine: dry mouth, headache or stomach upset may occur the first few days as your body adjusts to the medication. If any of these effects continue or become bothersome, inform your doctor. Notify your doctor if you develop: rapid/pounding/irregular heartbeat, skin rash, changes in vision, slurred speech, severe drowsiness, loss of memory, incoordination, confusion, depression, irritability or other behavioral changes. medication. If you notice other effects not listed above, contact your doctor or pharmacist.
They do match with a lot of your symptoms. I don't know if this is something you can just stop taking or you would need to taper off. You could try a 10% reduction in dose and see if it helps. That would be a safe place to start if you were to do a taper. If it helps, then you know you need to get off this medicine. Work with your doc on tapering off.

The website said there could be some rebound sleepless for a few nights. So I would try reducing by 10% and waiting for a few days to let things settle out.

http://www.medicinenet.com/zopiclone-oral_tablet/article.htm

 

[anciendaze]

@KateUK, when I wrote my second post it looks like I was writing at the same time you were. I did not read your response until after my post was up.

I'm glad you've had a visit by an actual doctor, but I suspect this is not a problem that will show up in such a simple way. You have been falling through the cracks in the healthcare system all along. You have had this long enough for me to suspect you now have a subtle problem (diastolic dysfunction in the left ventricle) which results in reduced cardiac output. In this case, oxygen saturation would not drop because oxygen is getting into your blood, but the rate at which oxygen is transported to cells is way down. This also affects immune response, which is very important where the body is under constant pressure from common pathogens, in the gut and/or lungs and sinuses. If it takes immune cells twice as long to reach a site of infection, and twice as long to report what they've found there to other cells, this has a disproportionate impact on their effectiveness. Once again, this will not show up in normal tests of immune function because most such tests merely count cells, without measuring the rates at which immune response happens in the body.

The literature on heart failure contains descriptions of problems with the gut that resemble yours as cardiac output drops. Fortunately, it is unlikely you are in actual heart failure. That would probably have put you in the emergency department long ago.

I'm also willing to bet, from your description, that you have dysautonomia. This will result in problems that only appear when you are upright or changing position. This is yet another way to fall through the cracks, as most tests are done with the patient supine or sitting. Doctors just assume blood pressure and heart rate are being controlled to maintain homeostasis, unless there are clear signs that homeostasis is badly broken. Episodic loss of oxygen perfusion in the brain will not be detected, but this can result in all sorts of weird problems, even some as dramatic as syncope or seizures. (Been there, done that.)

I can't tell you what the root cause of your problems may be, any more than anyone else's. I can tell you a number of real signs of organic illness appear to be present. Your mind may be in sad shape as a result, and you may make bad decisions, but this does not mean everything originates in your imagination. Brains don't work very well when they are not getting the energy they need, and they take a big chunk of the body's energy budget. This may happen because they are short of oxygen or blood sugar. It may also be the result of waste products not being cleared fast enough. Finally, there may be actual damage to the nervous system, which could be due to an infectious agent nobody has identified. This is strongly suspected in many cases of dysautonomia.

Your job is to hang on, and hang around until this business gets sorted out.

Maintaining hydration and electrolytes is an immediate problem. Adequate nutrition and sleep are only a short distance behind. After that we can worry about those tests.

 

[akrasia]

Kate,

Sorry to hear that things are so bad.

One of the over the counter remedies that I've found helpful for gut problems is Russian Choice Immune, which is available from iherb.com and has been receiving some good press lately on pr:

http://forums.phoenixrising.me/index.php?search/11997856/&q=russian+immune&o=date&c[node]=80

If it's within your budget, it's worth a shot.

 

[taniaaust1]

Kate, we never heard what you ended up doing. Im wondering how you are.

 

[anciendaze]

Just to add to the above. If anyone has private information about Kate's current condition we would appreciate private messages of reassurance, even if you don't feel this can be posted in public. We are well aware that a crisis can be life-threatening. Doctors who say "nobody dies of CFS" are simply ignorant.

 

[maryb]

@KateUK
For short-term relief of the worst MCS reactions (tachycardia, chest pain, breathing etc), something they taught me at the breakspear, I used to take 1/4 of teaspoon of Tri-salts with a teaspoon of Ribose in a glass of water..

I think the Tri-salts should be taken with vitamin C not ribose??
It works for me for mould exposure.

 

[KateUK]

I want to thank each and every one of you for your replies. I have a lot of replies to various posts I want to make but I can barely type right now. My situation is still pretty dire, and I'm now in a doctor-related situation I'm desperately concerned about. I don't like the path this is taking.

Please bear with me, I appreciate your comments more than I can express, and I'm sorry for not managing to reply before now.

I am drinking, and have found a protein shake I can tolerate (seems it needed to be dairy/whey free). I hope to be able to update properly in a short while.

 

[justy]

Hi Kate, thank you so much for using your precious energy to let us know you are OK.
I'm so sorry to hear about the doctor situation- I think I can make a good guess as to what that is about!

I'm wondering if you have been in contact with the 25% group? I suggest this hesitantly as I have a firend with very severe M.E who has not been able to get any help from them at all, but they do have an advocate who might be able to point a caregiver/relative of your in the right direction. Through my efforts to help this person I have seen how extremely dire the situation is in the UK for people with severe M.E.

Please let us know if there is anything we can do to help.

Sending gentle hugs
Justy.