Symptom management for moderate to severe symptoms (UK)

[Oak]

Hi everyone,

This is my first post here. I've been lurking for a while so hopefully I won't make any huge blunders, but please let me know! Unfortunately my brain fog has meant trying to read longer pieces of information quite difficult for me.

At this point I'm just trying to do anything that might stop the relentless deterioration I've been experiencing for the last 18 months that has left me wondering what the future holds.

A little background: I am 27, unable to work for the last 6 years, living in a shared house with friends and have been physically ill for just coming up to 6 years. I was in my final year of uni so there was the usual stress, but I started to feel physically unwell and need longer and longer amounts of sleep, generally 16 but up to 20 hours a day of on and off sleep per day. I feel I can't remember all my symptoms at that point, but I know they included fatigue, GI symptoms, feeling very cold, dizziness, confusion and similar. I also had a worsening of my mental health issues (agoraphobia, anxiety and depression).

During the two years that followed I struggled a lot. During this time my mum also died suddenly of cancer. Something I found particularly upsetting is that on many days I was far too exhausted to be driven by my dad to go and see her in the hospice, something I'd never experienced when I'd had 'just' mental health issues.

After those two years I feel things got somewhat better. I still napped in the afternoon most days and stayed home resting five days a week, but was able to go out for a few hours a couple of times a week (eg a book club, going for tea) and I was able to cook for myself and sometimes even go out socialising in the evenings as long as I was prepared to pay for it later. I'd have crashes that would last a few days but with some minor help with friends could just about cope. At the time it felt awful but now I miss those days!

This all changed 18 months ago. I'd moved into the same shared house I now live in with friends. It's the best housing situation I've had - we have shared cooking (that I now can;t always participate in) and are a generally supportive household. However, in November 2014 I caught a virus or similar of some sort. I had nausea and inability to eat properly that lasted about 2 months after and my mobility was effected. This is already getting long so I'll try to summarise what I'm dealing with:

- Crashes getting closer and closer together from less and less activity
- Pretty much housebound, have been a 3 minute walk from my door three times in 2016
- Using a stick some of the time indoors
- General feeling of fatigue, weakness, constantly like having a cold and then during crashes, severe flu
- Had to give up pretty much all cleaning/household chores
- When not in a crash I can just about cook a meal for myself, go on the internet, have a bath, talk with friends (not all in the same day!)
- When in a crash I feel so exhausted that I feel I wish I could rest, even when lying down in the dark and quiet
- When in a crash need help from housemates to be pulled to sitting upright in bed to eat
- When in a crash cannot get to the toilet properly downstairs (won't put what I've had to do here for now)
- When in or recovering from a crash I have to stop on the stairs, go slowly and still have residual chest pains for an hour after
- Nausea
- Headaches
- Upper back/shoulder/neck pains
- Dizziness with occasional mild vertigo
- Racing heart upon standing (worse/intolerable when in a crash)
- Heart palpitations
- Had been waking up with panic attacks, but this has abated since using a steroid nasal spray for allergies (that I didn't realise I had?!)
- Restless leg syndrome with increasing discomfort/sometimes pain in lower legs
- Food sensitivities to wheat, meat and dairy (I'm vegan and low gluten)
- Instant memory recall of stuff even like my friend's names is tricky, messing up sentences and word finding
- Probably not surprisingly my anxiety and depression and agoraphobia have got worse during this time as I feel so physically helpless and am relying on the help of friends for basic living tasks

I've had a bit of a nightmare getting any treatment or tests. I can go into more detail if anyone is interested but I've had no luck with the CFS/ME services. My GP is going to send me to a rheumatologist because she now suspects fibro, but I don't think she really knows what's going on as this time last year she didn't even realise I couldn't work?! (I've only been seeing her for the last 20 months).

Blood tests:
Normal other than
- high B12 (Not sure of number, I do supplement with b12)
- ESR of 27 (21 this time last year)

Had a mini home sleep study in Sept 2015 which showed some issues that might be UARS (a little like sleep apnea) but due to my general health and agoraphobia I haven't been able to get a full sleep study as the centre is far out of my city (Brighton, south of UK) and I don't know anyone with a car and public transport is a huge no.

Sorry this is so long. I've been meaning to post here for ages but anxious as I'm undiagnosed and have mental health issues. However, I don't want to sound dramatic but I feel sometimes as if I'm dying and I feel like I really need help. I know some people here have it worse than me and I don't mean to seem too needy. I just feel very stuck and afraid because I feel so profoundly unwell. Does anyone have any advice or pointers?

 

[taniaaust1]

Hi, Your ME is very very like mine is or was with your symptoms (except I didnt have mental health issues to start with). I use the kitty litter tray for loo sometimes when Im in a crash.

- Racing heart upon standing (worse/intolerable when in a crash)

I dont want to overwhelm you with info so Im going to say you need to go and see someone who is aware of postural orthostatic tachycardia syndrome (POTS) as Im almost positive you have this as part of your ME. You need a test for this done eg tilt table test.

The POTS side of things is often treatable some and not treating this will have you feeling worst eg more dizziness, more fatigue, more headaches, more nausea, more trouble thinking....an POTS can cause "mental health" symptoms eg anxiety due to the low blood volume hence lack of blood going to the brain and the adrenaline spikes it can give. Thing is that isnt a mental health disorder but an autonomic system disorder (so things like bowels and other things can be affected too with it).

 

[justy]

Hi Oak, welcome to PR - I used to live in Brighton and sometimes visit a two of my grown up children live there.

Your issues sound VERY much like mine have been over the years, including a severe crash 6/7 years ago now. All of your symptoms are familiar to me. The panic attacks at night can be hypoglycaemia and low adrenal function. I have low cortisol and used to have hypog symptoms a lot. Eating a small snack before bed - nuts and banana are good help with this.

I had 'anxiety and agoraphobia' diagnosis, but in fact for me they were not true mental health problems, but a result of having a longstanding, undiagnosed chronic health condition. It is not agoraphobia If it is reasonable to feel awful and helpless outside alone! many people with POTS have a misdiagnosis of agoraphobia and anxiety.

Restless leg - high doses of magnesium helped me with this, but it always comes back at some point.

In 2014 I finally went to see a world class ME specialist - KDM in Belgium an he found Lyme and co infections and severe intestinal permeability at the root of all my problems. I have now met many of his patients who are having good improvements in health. I am also a member of a Lyme board where many people got a dx of CFS/ME and now treating for lyme, Bartonella, chlamydia pneumonia, viruses etc are getting a lot if not all of their lives back.

For me I got well enough to go by tracking down for myself all the smaller things and trying to fix them as listed above, then just went to bed and didn't do anything else for months = just rest rest rest to stop any further progression.

Do you have any family to help and support you? do you have any income or savings for testing and treatment?

Have you been thorughyl evaluated by the NHS - especially for that high ESR - which shows inflammation - I have this high at times as well and I have a lot of systemic inflammation caused by the infections.

Take care and stick around - you may find a lot of help and support here, as I have done over the years.

 

[justy]

Oh, and I also got a wheelchair for going out so I could do things without crashing (occasionally), although I do need someone to push it.

 

[green_monster]

Hi Oak,

Not having access to a car is obviously a problem. Sometimes the dole will pay for taxi's to medical appointments if you are too disabled to use public transport. In some areas the NHS also provides transport, a kind of non-emergency ambulance service. A minibus basically. Maybe investigate these as solutions to getting to appointments, see if anything is available in your area.

 

[ryan31337]

Hi Oak,

Sorry to hear that you're struggling.

Sound advice from @taniaaust1 & @justy - I too would recommend looking into POTS as its surprising how big a factor it can play. I think its a good target for us in the UK as its straightforward to screen yourself at home & the GP surgery, its also becoming better recognised with NHS choices site & heart society guidelines if your GP is unaware.

I've just started seeing a new consultant who could be a big help, especially if others in his team are as eager to investigate. You would have to get yourself to London though and his NHS waiting list is about 10 months
http://forums.phoenixrising.me/inde...ll-very-promising-pots-treatment-in-uk.43598/

Ryan

 

[Oak]

Oh wow thank you all for your replies so far! It's making me feel quite emotional.

Only a short reply now because I'm exhausted and need to rest, but I was wondering what things are open to me whilst being housebound? I am both physically housebound but also agoraphobic (pre probably ME, though far worse now there is physical problem to back it up). I am on benefits (hb, esa and lower rate of pip) so have some but not a lot of money but am willing to spend what i do have on what might help me. I've been finding dealing with my GP hard because she clearly thinks this is a mental illness and doesn't realise how bad it's got (as I say she doesn't know me (or ME for that matter) well, so I can't completely blame her). I could really do with a home visit asI'mgenuinely unable to get to the surgery right now but as they think it's mental they won't do it so far, though they did do ahome blood test for me two weeks ago.

Things I do for myself currently:
- Supplement with b12 and d3
- Use a SAD lamp whilst eating breakfast
- Eat as healthily as possible (vegan, some junk food snacks but healthy mains)
- Try to do some mindfulness/mediation when possible
- Gentle stretching when possible
- Epsom salt baths ~1/week

Has anyone ever paid for a home sleep study? The british Snoring soc do one for £300 which is a lot of money for me, but I'm not sure if it only really checks for sleep apnea (as I say i think I may have UARS but not apnea)

 

[jimells]

Oh wow thank you all for your replies so far! It's making me feel quite emotional.

That's not surprising, since many patients also report emotional lability.

As others have posted, many patients with symptoms similar to yours have POTS, and it can be treated, if one can find a competent physician. I have the hyperadrenergic form of POTS, which means when I am upright for more than a few minutes my norepinephrine levels increase and cause tachycardia, palpitations, cold and clammy hands and feet, etc. I have pretty good results from treating with *small* doses of a beta blocker, although I still have to spend most of my time on the couch.

Welcome to the forum and good luck finding help.

 

[Valentijn]

- When not in a crash I can just about cook a meal for myself, go on the internet, have a bath, talk with friends (not all in the same day!)

Baths can be very exhausting ... my experience is that sitting in warm water raises my heart rate far too high, and regularly triggered crashes all by itself. I've switched to showers using a shower chair, keeping one leg propped up, with a heart rate monitor so I know when to rest and wait for my heart rate to get back under 100.

For cooking, it can help a lot to use a high stool or chair to sit on while in the kitchen, and cut out any chopping by getting pre-chopped protein and veggies. I also switched to almost entirely cooking with a slow cooker, so I can spend about 5 minutes every hour getting the meal started, adding spices, adding each ingredient, etc. And again, it's an activity where using a heart rate monitor can be extremely useful in showing you when you're actually working a lot harder than you think you are.

- Nausea
- Headaches
- Upper back/shoulder/neck pains
- Dizziness with occasional mild vertigo
- Racing heart upon standing (worse/intolerable when in a crash)
- Heart palpitations

As others have said, these symptoms sound a lot like orthostatic intolerance, which is extremely common in ME patients. It can be tested for with a Tilt Table Test (modified to detect delayed onset hypotension or narrow pulse pressure), and can often be treated.

Eat as healthily as possible (vegan, some junk food snacks but healthy mains)

Are you getting a good amount of protein? I know myself and some others report feeling much worse without it, though we're all different of course.

Gentle stretching when possible

You should view this as exercise, and take the appropriate precautions. Again, I wouldn't consider doing any exercise, including stretches, without a heart rate monitor.