Archive for the 'Chronic' Category

365 Days of Weight Loss with ME

It’s my 365th day of weight loss using MyFitnessPal.com and I’ve logged my food and exercise every day since I made the decisions to lose the weight.

I’ve lost a smidge off 2.5 stone.
I’ve lost 7″ of my waist, hips and bust.
I’ve even lost 2.75″ off my ankles and I never considered I had fat ankles before!

 photo 7342f173-9ad9-447b-b6e1-d80e10fbd497_zpsbd65ad28.jpg

I’ve kept to the plan by not denying myself anything bur rather have small moderate indulgences as treats and a day off every so often where I’ve gone over my allowance and just enjoyed it.

I’m set to sedentary on MFP because of my illness ME/CFS but I have been logging things other people would find trivial – like cooking or bleaching my hair – because for me those things take a lot of energy and are outside my normal activity levels.

When I started trying to exercise I had to push myself to do a 10 minute seated workout and managed just the warm up section of my Pilates DVD (mat work).  I used tiny hand weights and had to limit my exercise to every other day or so.  I started swimming in the summer and the first few times I managed maybe 4 lengths over 20 minutes with lots of resting inbetween.

Now I can do nearly an hour of floor based Pilates, 20 minutes of (gentle, low impact) workout DVD’s and am up to around 1.5kg weights (and increasing as I focus on some strength exercises).   I’m swimming 2-3 times a month and although I still have to rest between lengths and go gently on average I’m burning the calories MFP would expect me to for the time I’m in the pool – meaning I average out to a normal person in swimming terms 😉

Body Control Pilates, swimming and lately toning with weights has been achievable exercise which has given me results & benefits.

pilates diamond press

Pilates Diamond Press – Fantastic for My Posture

My stamina is better, my flexibility is much better, my back pain is less, I had to get smaller clothes. My posture has improved. I wouldn’t say I have more energy in a conventional sense because of how my illness robs me of energy but I do feel lighter and more able to do bouts of activity and recover reasonably quickly. When I push myself (which isn’t always a good idea with my illness) I can push myself for harder and longer before I feel I’m about to collapse.I’m about 70% to target which I hope to hit in May 2013 if I can get things back on track from my current plateau.  I’m taking delivery of a Fitbit this week and am hoping to start doing some walking to increase my cardio and see if I can build up gradually to doing more.

The Fitbit should provide some interesting information about the level of my activity during the day as it’s very sensitive.  Being so sedentary it’s sometimes difficult to know just what calorie allowance to use and I switched to Lightly Active in December as I was doing a bit more routinely but that led to my weight plateauing through January.  The Fitbit should help give me some insight into my average activity levels as well as encourage me to up my step count if possible.  Motivation to move isn’t the issue, as ever with ME/CFS it’s physical resources I lack not determination.

I have managed to increase my exercise over the year but I mainly owe my weight loss to diet and following a calorie controlled diet which is low in fat (like the Swank Low Fat Diet for MS I’ve mentioned before).

More background about how I’ve lost weight with ME/CFS:

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Losing Weight with ME

I’ve been trying on and off to lose my excess weight since I gained it which is going on 12-13 years. I did lost a stone early on and another stone and half some years ago but it’s crept back up and I’ve been flipping back and forth a stone.

I turn 40 next Autumn and I don’t want to still be fat by then. So it’s a good milestone to give me the incentive to finally focus and lose the extra weight. But it’s not easy with my illness.  Exercise is very difficult and cardio exercise pretty impossible without worsening my overall condition. Strengthening work, toning and stretching are possibilities but most be done modestly.  Add in that my gut issues already restrict what I can eat and that helpful things for my gut don’t always fit in with healthy eating plans (lots of soluble fibre like white rice, white bread, potato) and it’s going to be a tricky balancing act.

I’m 8 weeks in to my healthy eating and upping my stretching/toning/moving about. I’ve lost 7lbs so far which I’m really pleased about. I’ve also lost so far 3″ off my bust, 1.5″ off my waist, 2″ off my hips and 1.5″ off my ankles (who knew I had that much to lose off my ankles!).

I’ve had some pilates exercises that the physio gave me for my back problem many years ago which for most people would be considered the warm up to a main session.  I’ve also added in a sitting down workout on DVD by Rosemary Conley which is achievable for me on better days. It’s a 12 minute routine, all seated, which can be made a little more energetic if that suits.  But it’s stretching muscles I don’t normally use so it’s a big thumbs up from me.

I’ve dug out my fitness gym ball to do a little bouncing and also some chest exercises.  Some work with small weights is a definate possibility for me in my current level of function though I have to be careful as even that sort of exertion takes it’s toll. Using a rebounder for ME/CFS is another possibility for low impact exercise that will get my lymphatic system working (apparently the PT Rebounder is the one to get as others as not soft enough for PWME)

I have a 2nd DVD to try which is aimed at seniors by Jane Fonda but looks a bit more active than the Conley one.  Some of the exercises are standing up (using the chair for support) and the first routine is 20 minutes. So I’m working up to that.

[UPDATE 13 April 2012: The Jane Fonda Prime Time Fit & Strong DVD is an achievable workout for me. It’s 25 minutes long and alternates between seated toning exercises and standing exercises where you can use the chair as a support. Whilst it’s a longer session there’s no cardio element to it at all, no lunges or jumping. Just using your muscles. She goes at a moderate pace with quite a few reps of exercises but it’s been fine for me. There’s quite a bit of chat about getting older as it is aimed at seniors but a lot of the things apply to myself with chronic illness such as the importance of balance exercises to avoid falls, ankle strengthening to avoid stumbles and by how much seniors can build muscle mass with simple exercises. I’ve noticed it’s helping with flexibility and with posture. It’s also good that it’s different exercises to the ones on my other DVD and I get some variety on those better days.

I’m also now doing the warm up and some extra exercises suitable for my back injury from Lynne Robinson’s Pilates DVD. The warm up is slow paced, all the exercises are done lying down on a mat and it’s a more gentle relaxing set of exercises for those not so good days.]

I’m also thinking I’ll try using the Eye Toy we have for my husband’s PS2 and some silly games that get the arms moving. If I do a short session sitting down it’s fun and it’s get the blood pumping hopefully without overdoing the cardio.  I also bought Kinetic for PS2 Eye Toy which is a fitness programme and mini games based on cardio, toning, mind/body (like Tai Chi and yoga) and some martial arts.  I’m still exploring that to see if it is suitable for me. This is my budget version of getting a Wii. The Wii is used by quite a few disabled people to help with fitness but it’s a bit out of my budget at the moment.

[UPDATE 13 April 2012: PS2 Kinetic using the Eye Toy has proved a bit challenging not least because you need 3-4 metres of clear space from the tv even with the special lens adapter for the Eye Toy. I have used the Play for Eye Toy games again but the cardio aspect is a bit too challenging. I can stretch and tone but cardio type work leaves me flattened within minutes.]

The other thing is just to try to stretch muscles and move my feet when I can without going totally crazy.  It’s a tricky balancing act and so easy to wear myself out as my motivation to be active is very strong.

I’m using the site MyFitnessPal to help my weight loss. It’s works by tracking calorie intake and exercise, has a strong community and a large database of foods which you can add to.  Calorie tracking alone isn’t enough but it does work out allowances of things like carbs and fat, so along the way I’m learning good choices and bad choices to keep on track and not feel hungry.  You enter your activity level, how much you want to lose and at what rate (I’ve opted for a pound a week) and it figures out the calorie intake appropriate to you.  Mine is currently 1400 calories a day.  The members forums have helped me learn good foods to eat to not go hungry and we’ve made lots of small changes to our diet.  Seeing as my main tool for weight loss is going to be diet this is a really positive step.

I’ve made a few friends on the site who also have health problems that limit that exercise abilities. I’ve even met someone with ME who manages to work part time that manages to do some mild cardio using the Wii and kettlebell work (kettlebell workout for ME/CFS).

thermal comparison of a 250 lb woman and 120 lb woman and what that extra weight does to the muscloskeletal and visceral system

I’m drinking more fluids, eating more healthily and doing specific exercises to help stretch and tone. I have 50lbs to lose in total, 43lbs to go and if the plan works I’ll be at target this time next year.  It’s a long journey but slow and steady wins the race.  I’m giving myself rewards for every 5lbs lost and I keep looking at beautiful clothes I can wear once I’ve lost the weight 🙂

I figure losing 50lbs has to make everyday life a little easier and be so much better for my body especially going into my forties and my risk factors increasing for certain diseases.  I’ve finally made the connection that fat isn’t just love handles and thick thighs but fat is around my internal organs too. I have to lose the weight so my body doesn’t have to work so hard.  It’s not going to be easy but I’m determined to make it stick this time.

Created by MyFitnessPal – Free Calorie Counter

Push It for ME Research – 11 Sep 2011

my wheelchair at stowe poolI’m proud to announce my fundraising wheelchair push/walk is going ahead in just 5 weeks time.

Push It is a 10k fundraising wheelchair push/walk for ME Research on Sunday 11 Sep 2011 in Lichfield, Staffordshire, UK.

My condition means I can’t run a marathon or do a skydive to fundraise. So on Sunday 11th September 2011 a team of volunteers will push me in my wheelchair over a 1o km (6.2 miles)  route around Lichfield. Some will walk the full distance, others maybe just 1km (3/4 mile).

Sitting in the wheelchair while being pushed might not sound like hard work for me it’s actually going to be a huge effort on my part.  Due to ME/CFS I am mainly housebound and when I do go out it requires careful planning or my condition can be worsen very easily.

I’ll be documenting what happens and keeping you all informed through live updates via twitter and facebook

I hope you’ll join me on my adventure and help me raise money for ME/CFS research.

You can donate online or in the UK text “PUSH 50 £5” to 70070 (you can choose any amount up to £10 per text donation).

 

More information about how to join me and route/schedule

 

 

POTS Negative, Possible Other OI – Postural High Blood Pressure

So my Lovely GP administered a proper POTS test in her office as promised for me at the end of her surgery so we had enough time. My ECG hadn’t shown anything abnormal, other than having a very high heart rate (about 117-122bpm resting sitting down).

I was careful not to over exert in the morning before we arrived so that my resting heart rate wouldn’t be too bonkers to begin with and the increase all the more dramatic.

Except when we did the test my heart rate did not spike as dramatically as I had thought it would. It raised from a resting rate of around 107bpm to 116bpm standing after a few minutes and then there it stayed for the next 10 minutes. My heart rate was consistently high, but not high enough or a large enough increase in bpm to confirm a POTS diagnosis.

11oct2007 swirly headWhat did happen however was that my blood pressure climbed from lying resting to standing. And it continued to climb over the next 15 minutes. It’s a little high when resting for my age but once I was standing it was a cause for concern and further investigation. My GP took bloods there and then, then requested they be repeated once the results came in.

I’m going to have a 24 hour blood pressure monitor from the surgery next week when they’ll also take the repeat bloods for testing.  I’m trying to work out a timetable for the day so that I can get a variety of measurements as it goes off every 30 minutes during the day and every hour while you sleep.  So I’ll need to have some reading sitting relaxed and then for others begin standing or moving around a few minutes before the monitor goes off.  Otherwise I’ll only show fairly normal readings for the sitting down and sleeping parts, when it’s being upright that seems to make it climb.

I repeated the POTS test using my home blood pressure monitor the day after I saw my doctor (BP monitor very similar to the doctors) and I pretty much replicated the results of the previous day.  My heart rate did climb bit only to around 115bpm over 10 minutes of standing still, while my blood pressure rose and then after 3 minutes of sitting back down my blood pressure dipped.

RESTING  Start of test:   BP 128/96, Pulse 96

STANDING 3 mins:          BP 130/92, Pulse 106

STANDING 10 mins:       BP 132/95, Pulse 115

RESTING 3 mins:              BP 112/84, Pulse 90

Out of interest one weary evening I measured my blood pressure having climbed the stairs at bedtime. I felt shattered, my heart was thumping inmy chest (which it doesn’t always do when my HR is fast), I felt headachey and light headed. When I measured my pulse it was 124bpm but my blood pressure was up to 137/99 compared to 87bpm and 127/87 sitting on the sofa.

Postural Hypertension or Orthostotic Hypertension (high blood pressure on standing up) does exist but is even less well known that Postural Hypotension (low blood pressure on standing up) which is not particularly well known itself!

Unless my blood tests reveal an possible underlying cause, or perhaps even if they do, a referral to a cardiologist is likely the next step. Unfortunately my Lovely GP doesn’t know much about local cardiologists so doesn’t have someone lovely in mind she can send me to so it might be a bit of pot luck. If the cause is OI related will I find a cardiologist who knows about it or is willing to be open minded?

Dr Bell defines 5 kinds of Orthostotic Intolerance

There are five separate abnormalities than can occur during quiet standing:

1. Orthostatic systolic hypotension where the upper number (systolic) blood pressure drops. The normal person will not drop BP more than 20 mmHg on standing up. One patient I follow with CFS had a normal BP lying down (100/60) but it fell to 60/0 on standing. No wonder she was unable to stand up – a blood pressure that low is really unable to circulate blood to the brain. In any ICU [intensive care unit] they would panic seeing a BP like that. And she was turned down for disability because she probably was a hypochondriac.

2. POTS stands for postural orthostatic tachycardia syndrome. A healthy person will not change their heart rate standing up for an hour. In a person with POTS, the heart rate increases 28 beats per minute (bpm). Some experts say the heart rate should exceed 120 bpm to have POTS. But either way, this increase occurs frequently in CFS. I think the increase in heart rate is linked to the decrease in blood volume. (Orthostatic intolerance has been called Idiopathic hypovolemia in the past.)

3. Orthostatic narrowing of the pulse pressure. The pulse pressure is the difference between the lower number of the BP from the higher number. For example, a normal person with a BP of 100/60 would have a pulse pressure of 40. It is actually the difference between the upper and lower number of the BP that circulates blood. If the pulse pressure drops below 18, it is abnormal and blood would not circulate in the brain well. We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out.

4. Orthostatic diastolic hypertension. The lower number of the BP often reflects the systemic resistance, and while standing many persons with OI and CFS will raise their lower BP number (diastolic) in an attempt to push blood up to the brain. Sometimes this is dramatic. One patient being followed with CFS had a low blood volume, about 60% of normal. While lying down, his BP was 140/80. After standing, his BP rose to 210/140 before we made him lie down. His pulse went up to 140 bpm. He felt rotten but refused to sit down by himself…

5. Orthostatic diastolic hypotension. This represents a fall in the lower number of the BP, and seems to be the least frequent abnormality in patients with CFS I have tested.

My variations in BP are not as dramatic as the patient Dr Bell talks about but they’re enough to give me concerns. Especially with an illness where many experts already believe that the heart is under a lot of strain.

20080224_selfIt might account for why since I’ve been taking LDN I’ve felt I have more energy but haven’t been able to maximise on that – probably because everytime I am on my feet for longer than a few minutes my BP is rising and my heart rate is too fast (I’ve measured my HR on the go up to 160bpm just doing very light physical activity like climbing a few steps slowly).

Of course the high heart rate could be as my Lovely GP suggests due to enforced sedentary lifestyle and a bit of deconditioning but it doesn’t feel like it to me. I’ve stayed relatively mobile and over the last year tried to gently increase activity but keep hitting brick walls that I feel are down to tachycardia.  I can’t prove it because I can’t exercise my way past my high HR :/ And of course the high BP could have an underlying cause not yet diagnosed but the postural/OI thing is somewhat intriguing.

Hopefully the 24 hour monitor will demonstrate some juicy results.

This is a good research paper on postural high blood pressure (one of the few I’ve found) in PDF about Orthostatic hypertension: when pressor reflexes overcompensate by Joshua Fessel and David Robertson – or here is a web page version of the article

Since I’ve not presented in the clincial test with classic POTS  I’ve sometimes felt in danger of other ME/CFS people saying I haven’t got real ME because I don’t have POTS or a drop in blood pressure like Orthostotic Hypoptension. These are classic signs that typically accompany ME/CFS. But Dr Bell’s article re-assures me that there are different forms of OI and a rise in BP is as valid in an ANS autonomic sense as a drop in BP or big HR increase like POTS.  Standing up sure can have some odd effects on ME/CFS people.

Alternative Low Dose Anti-Depressants to Amitriptyline

138/365 amitriptyline 30mg

I currently take low dose of Amitriptyline (30mg) for pain and migraine relief.  I’ve been looking at alternative low dose anti-depressants for use in ME/CFS to help with pain and if possible aid sleep also.

I apologise for lack of links to evidence for my findings. I compiled this document for personal use as I researched but it struck me it may be useful for other people, particulalry with ME/CFS, to see the list too. Where I found a tricyclic was not sedating or had a bad reputation heart wise I didn’t research it any further.

If I were to switch tricyclic I’d like to try Doxepin or Trimipramine. Doxepin is supposed to be effective for IBS. eczema, chronic pain and to aid sleep – all useful for me. Trimipramine is good for chronic pain and very effective at sedating without disrupting REM sleep.

Amitriptyline works well for me but I do have a fast heart rate. My GP does not think this is due to the amitriptyline as it’s such a low dose but I’ve heard from other ME/CFS people that even a 10mg dose can effect heart rate.

TRICYCLICS

Tricyclics like amitriptyline are sedating and good for pain. But side effects can include heart problems, although many doctors say this is not so on low doses but some patients (particularly ME/CFS patients sensitive to medications) say it does.

Tricyclics can interact with morphine, tramadol and antibiotics.

Amitriptyline is cheap and very commonly prescribed. Alternative tricyclics include:

  • Doxepin (Sinequan, Aponal, Adapine, Deptran, Sinquan)  Sedating so useful as an aid to sleep. Can be useful for IBS (lessen gut activity and secretions). Used for insomnia as Silenor. Good for chronic pain & tension headaches. Used for eczema. Helps with itching.  Used in fibromyalgia. The typical dose is 10-50mg daily.
  • Trimipramine (Surmontil, Rhotrimine, Stangyl) is the most sedating tricyclic. More effective sedation as aid for sleep than amitriptyline and it doesn’t suppress REM. Good for chronic pain. Typical dose is 5-75mg daily.
  • Duloxetine (Cymbalta, Ariclaim, Xeristar, Yentreve) sedating. Has been studied in use for ME/CFS and a study for FMS at 60mg study showed good results. Duloxetine is thought to enhance the nerve signals within the central nervous system that naturally inhibit pain (in diabetes feet, leg and hand pain). Might cause high blood pressure and OI problems. Can cause sexual dysfunction which can persist after treatment has stopped for months or years. 
  • Trazodone (Desyrel, Molipaxin, Trittico, Thombran, and Trialodine) (SARI) Is sedating so good to aid sleep. Typcially has less side effects than other tricyclics. Effective for sleep but less effective for pain. Sometimes taken in conjuction with sedating tricyclic like Nortriptyline.
  • Dothiepin (previously known as Prothiaden, Dosulepin) Sedating so could aid sleep but danger of long term toxicity to the heart
  • Imipramine (Sormontil, Antideprin, Deprimin, Deprinol, Depsonil, Dynaprin, Eupramin, Imipramil, Irmin, Janimine, Melipramin, Surplix, Tofranil) Is not sedating.
  • Nortriptyline (Pamelor, Allegron) Is not sedating but good for pain so can be effective combined with another sedating tricyclic.
  • Protriptyline (Vivactil) Is not sedating.
  • Clomipramine (Anafranil) Is not sedating. Can’t be combined with SSRI.
  • Despipramine (Norpramin, Pertofane) Not for patients with a family history of dysrhythmias.

New tricyclics which generally have less side effects but are more expensive:

  • Gamanil, Lomont (lofepramine) Is not sedating
  • Motipress (Nortriptyline + Phenothiazine)
  • Motival (nortriptyline + fluphenazine)
  • Triptafen (amitriptyline + phenothiazine)  Only tends to be prescribed short term.

SSRI’s

SSRI’s like Prozac are  not as effective for pain but do energise.  But this can be problematic with ME/CFS possibly due to abnormalities involving serotonin transmission. Dr Cheney urges against the use of SSRI’s and other stimulant medication as it effectively fries the brain and “taken over a period of 10 years or so, can lead to a loss of brain cells, causing neurodegenerative disorders” . But another study showed SSRI’s are effective in improving numbers of natural killer cells.

Sertraline (Zoloft) in some studies show major improvement in ME/CFS. Prozac, Zoloft and Paxil (paroxetine) have been shown in controlled, blinded studies to improve autonomic function.

Prozac, Zoloft and Paxil are most likely to suppress libido.

OTHER LOW DOSE ANTIDEPRESSANTS

Venlafaxine affects serotonin and noradradrenaline levels. It activates energy levels but may interfere with deep sleep. May be effective in increasing pain levels. May possibly reverse immunological disturbances involving natural killer cell activity but other studies have shown it has little benefit for ME/CFS.

Wellbutrin increases dopamine. It can be taken alone or with another antidepressant.

MAOIs raises levels of noradrenaline, dopamine and serotonin but need major dietary restrictions that can otherwise produce a potentially fatal reaction.

USEFUL LINKS

Sleep in CFS – Dr David Bell

Using Antidepressants to Treat Chronic Fatigue Syndrome – Dr Charles Lapp

Treating CFS Sleep Dysfunction – Sue Jackson

Trazodone in Chronic Fatigue Syndrome (ME/CFS) Treatment

Doxepin helps itching, why;?

Amitrityline – Mingraines (useful info about side effects even at low doses)

Amitriptyline – Netdoctor

SSRI and Stimulants: Frying the Brain – compiled from notes between Carol Sieverling & Dr Cheney 2000

High Heart Rate (POTS)

55/365 heart rate monitor my normalThe idea of Pacing By Numbers is an interesting concept but a little controversial as some health professionals think it’s a bit obsessive. To those trying it they find it a way to quantify when and how much effort to use and it gives a clear signal when to stop.

Basically you wear one of those heart rate monitors used by people at the gym and try to keep your heart rate below your AT (anaerobic threshold) which is when you start to use energy you don’t have. For me using the calculation that’s 106.

Having bought my HR monitor I started to wear it to observe what my heart was doing when I was resting, sitting using the laptop, getting up to the loo, preparing lunch or a cup of tea, going up stairs and so on.  I discovered my average sitting around doing things like watching telly was between 97 on a good day and 108 on a bad day.  When I got up to do things, gentle things like make a cup of tea, it was up to 130-140. That’s higher than most people get when they work out. My maximum heart rate is supposed to be 160.

When I went on high doses of tramadol and high strength co-codamol it was even higher and at one point walking from the car up a few steps to my brother’s front door my heart rate hit 162 at which point I stopped looking at the monitor in an attempt to relax as much as possible!

Having done some research about POTS (Postural Orthostatic Tachycardia Syndrome) especially in M.E. I made an appointment to see my Lovely GP to discuss whether it could amitriptyline causing it or whether we might be looking at a POTS diagnosis.

I saw my Lovely GP today and she says it’s very very unlikely the highHR is due to amitriptyline as the dose is so small.

She hadn’t heard of POTS but I had printed 3 articles, a testing sheet (with CD copy) and a list of specialists for her. She was very interested to learn a little about POTS and keen to read up.

Happy World Heart Day!

By Robinn on Flickr

I’m going back on the 17th May at the end of her surgery to do proper POTS testing so we have lots of time.

She took my pulse sitting which I guessed right was 104 (she was impressed I could guess my heart rate but I didn’t tell her I’ve been wearing that heart monitor a lot!). Then I stood for like 30 seconds and she took it and it was 116. Not a POTS test but enough to both satisfy and equally fuel her interest. She said 97-104 as my average sitting rate isn’t totally surprising as I’m technically unfit from the sedentary ME thing but when I told her if I lie down and do deep relaxtion it doesn’t change she was a bit surprised and intrigued. I have an effective deep relaxation track which almost sends me to sleep and it lasts 30 minutes but even with that lying down my heart rate doesn’t seem to dip below the low 90’s.

I’m booked in for an ECG tomorrow morning with the practice sister to rule out heart problems.

My GP says since the NHS funding cuts and being in the new world the system is all very confusing again and it seems very difficult to do the “Book and Choose” of before where you could pick any specialist you wanted. So seeing an out of area specialist may now require an application for special funding or perhaps referral to local cardiologist then on to POTS specialist. Seeing as how most docs don’t know about POTS that seems like a long shot to me.

Atenelol

By deartistzwei on Flickr

But I did tell her that I have friends online with POTS who are being treated by their GP using beta-blockers (Propanolol being the one of choice for POTS and ME) so we could maybe do without a specilaist referral.

Am stupidly excited at the prospect of trying Propanolol as I think my high HR is responsible for a lot of my “stamina” issues – why I can only stand for a few minutes or walk very short distances. I’m excited about Propanolol because I know a lot of people in the ME/CFS pacing with HR monitor Facebook group have had good success with it but not with other beta blockers.

She does have a good article on POTS (from John Hopkins CFS clinic) which lists drug therapy options (including some notes from me! Like how stimulants are not advised by ME experts and the beta-blocker recommended isn’t tolerated well by ME people) so she can do her homework on other options she might think are more appropriate or not.

She was apologetic she couldn’t fit me in next week so I re-assured her my heart has been fast for a long time so it can wait a little longer. And I only have to wait 2 weeks anyway! Suits me well as I have the phsyio specialist next week with my back which is a 45 minutes assessment so that’s my big task for next week.

I’m relieved I don’t need to stop the amitripyline as it is very effective for pain control especially my chronic back pain and migraines.  I have a little seed of doubt as to whether it could be triggering POTS but it is a relatively small dose and as it’s effective if the POTS can be treated successfully then it’s not an issue anyway.

UPDATE 4th May 2011: Had my ECG today which was fun thanks to a lovely Sister even if my heart rate was a bit scarey! Hitting 129bpm just sitting down I think due to getting up early, washing, dressing and walking from the car to the consulting room. She tried to do it standing up but the signal kept cutting out so she took one sitting and one lying down. When I lay down it went from 129bpm to 108bpm but then climbed again. Not a good indication of POTS or not because I never got relaxed enough and was recovery from moving around. But definately showing my fast heart rate in action! I guess I’ll find out if there’s any underlying cause from the ECG when I see my doc again in 2 weeks.

Meanhwile I’ve been told by a ME friend that just a 10mg dose of amitriptyline was enough to take her resting heart rate from an average 70-80bpm pre-amitriptyline to 100bpm on the tablets.  So I think when I see the doc our first line of action should be to withdraw the amitriptyline to see what effect that has.  Unless she thinks we should treat it anyway as amitriptyline has been so effective for pain and migraines for me. Plus there are other tricyclics with less side effects I could try (which are more expensive) which is something else to throw into the mix. Doxepin and Trimipramine being my shortlisted favourites to try (in that order). Doxepin is good for migraines, chronic pain and IBS and eczema as a bonus and it’s more sedating so could help more with quality sleep.

I’ll have to see what the Lovely GP thinks!

Warm Front Grant Rant

I re-activated my Warm Front grant in Autumn 2010. It had been on hold while we waited for our landlord to invest in new windows Once he’d started compensating us for heat loss due to drafty windows and it was also apparent that we were staying put for a while ratther than moving, I phoned and re-activated my application to get free insulation work done on the house.

After I was re-assessed (or rather the house was) they can to the same conclusions as last time – loft insulation top up, cavity wall insulation, new jacket for water tank – but with the addition of cutting a new loft hatch in part of the house where to assessor thought wasn’t accesible from the main loft space.  Although he didn’t actually go into the loft as his ladders weren’t long enough (not very professional although he was very friendly and informative about the process).

I’ve been waiting around 4 months (maybe longer I forget the dates) to get an installer assigned to do the work. Today I got a letter from my newly assigned installer telling me they’ll come “to assess and where possible complete this installation” on 30th March 2011.  Except the letter also states that work must be completed by 27th March for me to qualify for the work. Huh? **update below

I phoned Warm Front, who are less friendly than they used to, to ask what that 27th March date meant.  Was it a deadline for the installer or some kind of deadline (previously unknown) to my grant eligibility?  I was told that all work for current outstanding applications must be completed by end of March or else the money would be gone.  If I couldn’t get the work completed by end of March I would have to re-apply when (if?) they re-open for applications sometime (unconfirmed) after April 2011. There’s some talk that the criteria will change next time so I don’t even know if I would qualify next time around.

It’s rather unsatisfactory to have enquired about progress of the work in January to be told it was awaiting assignment and there was a backlog then to discover a time limit for the work which they never informed me of.  Even their web site is woolly about it. It says applications are not being accepted and that,

“All existing applications to Warm Front will be honoured and, as far as possible, works will be completed by the end of March 2011.”

But it doesn’t state that if the work isn’t completed that’s the end of your grant and window of opportunity.  Being up front would have helped me not have to ring them up and get the advisor who must be sick of telling people the same thing and fielding complaints about not having work allocated and running out of time.

Something that really irritated me about the process though is my letter tells me to “please ensure that loft spaces are clear of personal belongings, debris and any boarding prior to our arrival”.  I’m presuming like so many things now if it isn’t clear they won’t install in that part of the loft.  But I’m getting this help because I qualify on the basis that I can’t take care of myself – I can’t bathe myself or go out of the house on my own let alone go up in the loft or shunt things around!

These Government assistance schemes don’t really go as far as they need to or join up the thinking. I got a letter last week about getting subsidised assistance to switch my tv to digital and am tempted to get a freesat box as they will install the dish and box for a very reasonable amount.  But what the scheme doesn’t do is tell you if you need, or help you to get if needed, planning permission for the dish.  They think if I struggle to negotiate switching my tv to digital that I’ll be perfectly fine applying for planning permission?  Hmmm.

As for the insulation work I’m going to have to ask Growler to ring them and see a) if the work is carried out on 30th March when the letter says it must be done by 27th if we’ll get a bill for the work and b) if they could come earlier because if they assess and can’t do it on the 30th March it won’t get done at all.  My ME/CFS brain can’t cope with that conversation plus he’ll know days he might be able to make himself available as they want to arrive between 8-9am and take 4 hours to do the work and they need access inside and out.   So a bit much for me on my own.

I imagine there’s going to be a lot of people who have been waiting a long time for they’re heating and insulation work (heating particularly was being quoted a long waiting list) and who are going to be furious to discover their grant has been cancelled because the scheme couldn’t get the work scheduled in time.  And Warm Front must be pretty unhappy that their budget got squeezed so much they had to stop accepting applications and ended up in this situation stuck between installers who want to get cash and clients who want to get warm homes.

I just hope my home gets to have the insulation work done in time.

 

**UPDATE: So hubbie spoke to the installer and the 27th March was a typo on the letter. Phew! Also she says there is a bit of wiggle room to get work done. Double phew!


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