Power, energy, and other random thoughts…

It’s been over a week since I last posted. Between my major projects (Foggy Frog book and AAEE 2016 Conference) and the weather here it’s been difficult to find time to write here.

Yesterday, just as I was about to write my post, the power went out at home. It was out most the day so instead of working (everything I’ve got to do at the moment is online) I spent the day reading Harry Potter and playing with the cats.

It was interesting working out the best ways to stay warm when the heater didn’t have it’s fan (it was warm right in front of it but the heat didn’t get very far) and I didn’t have electricity to make the gas hot water work for a bath or the kettle work for tea.

In the end, I used the stove (gas and I could light it with a match) to boil water for tea and just sat as close as I could to the fire most the day with the cats for company.

Anyway, on to what I was planning to talk about yesterday…

Testosterone – an Update

It’s been over 3 months since I started on Testosterone treatment for pain and energy management.

Using the syringe to measure and apply the cream to my skin

The first few months I didn’t really notice much difference. There was a good reason for that though as, although we started at the usual dose for women and doubled it at the end of each month, I didn’t seem to be absorbing much of it. The free levels in my blood only went up by 0.3 over the first two months from 0.4 to 0.7 (normal range for women is 1.5 to 8 – I don’t remember what the measurement units are sorry)!

Rubbing the cream in to make sure as much as possible gets absorbed

However, once we doubled the dose again, for a total of 1 mL daily, my free testosterone levels in my blood have finally reached low-mid normal range (around 2). I’m beginning to notice some changes in my base levels of pain and a decrease in the number and intensity of the crashes I have. Nothing really worth claiming as a significant improvement yet, but even the change in crash frequency has allowed me to get a lot more done recently.

Foggy Frog and the Pain Gang Book Launch

We’ve set a date for the official book launch! There will be a live event on Saturday 24 September 2016 at Burnside Library, followed by a series of online events during Invisible Illness Awareness Week (September 26 – October 2 2016). Register for the live event here and stay tuned for more details of the online events.

If you have your own blog or podcast and would be interested in being a part of the Invisible Illness Awareness Week events let me know in the comments or contact me below.

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Pacing: How to add new activities

Over the weekend, in between the many social events we had on, we picked up a secondhand electric bike for me to use. This means I can now add riding into my exercise regime, but it also means I need to be aware of how I’m coping and adjust my activity levels to fit this in.

The concept of Pacing is one of the key mechanisms I have in place for managing my chronic illnesses. It’s basically a technique of managing activity levels to maintain a balance of rest and activity that keeps you below your current threshold for exertion.

To date, my pacing has been focused quite strongly on my step count and time spent doing daily activities related to work, social life, and household chores. I have found a balance of mental and physical activity which has allowed me to avoid many potential crashes or increases in pain and fatigue levels.

Since starting the Nortriptyline, I’ve found that I’ve been able to do more physically without increasing my symptoms or crashing for multiple days at a time. My brain is slightly more foggy than it’s been in the past but not as bad as it was on the Cymbalta which caused multiple side effects that impacted my ability to work and participate in activities I wanted to do.

Some of the things I’m considering as I once again adjust my lifestyle to add in and modify my activity levels are:

• What are my long term goals and priorities? As you’d be aware, my current focus is strongly on getting to the point where we can start a family. I’m mostly happy with my current levels of mental activity (work, reading, etc) but want to increase my physical capability and my social life. Many of the social activities I miss participating in had some physical aspect to them; things like participating in rogaine events with my husband and going for walks and rides together. To do these things I need to focus on my health more and increasing my ability to get around independently without relying on the car all the time.
• What is my current baseline for each activity? The major thing about pacing is that it takes into account your current abilities and can lead to increases OR decreases in activity level over time. The first step in pacing is to set a baseline and aim for 10-20% lower than that as your initial target. When adding in new activities it is important to make room for them, so you would lower your targets for other activities to have the energy to do the new one.
• What am I already doing and what can I adjust? Earlier this month I made the decision to drop all my volunteer work for at least the month of March. This has opened up space for me to consider new activities and adjust my other activities to better suit my current needs. To add in riding I’m also stopping any increases in step count and instead focussing on maintaining my current average, my yoga has dropped back to just basic stretches throughout the day, and I’m not taking on any additional work for at least the rest of this financial year.

Once you’ve considered your options and worked out if it’s feasible (and the best use of your limited energy) to add in the new activity, it’s time to create a plan. The plan should always be focused on your energy levels and how you’re coping. This is not a graded exercise program where you increase activity levels and do them at set intervals and in set amounts independent of how you’re feeling!

My plan for adding Bike Riding into my Pacing…

I had my first ride yesterday morning to test the waters. I rode my bike a total of just over 1 km (just around the deadend streets around my house). At the end of the ride I was very sore and quite exhausted but I was already improving by the end of the day and I haven’t had a major decrease in energy levels today (I normally get PEM the day after I overdo anything that lasts for 24-48 hours). To me this indicates that this is a good starting level.

Based on the outcomes of my test ride, my current plan is to do the same short ride every 2-3 days for 2-4 weeks. If this doesn’t lead to any PEM or major crashes, I will then increase the distance by no more than 10% and maintain that level for a further 2-4 weeks. This cycle will be continued until I reach a point that does cause PEM or a major crash, at which point I’ll decrease by 10% and maintain for at least a month before trying any further increases.

At the beginning of April I see my exercise physio and I’ll go through this plan with her. There may be adjustments based on her input.

A quick No Buy Challenge Update: We’ve reached week 15 and the 3/4 mark of the challenge. In the past week I’ve purchased my electric bike (on the approved purchases list) and a duplo set for when our friend’s children come to visit (also approved – not for me and something that has been considered for the last 2 years).

Week 7 No Buy Challenge: Celebrations, side effects and PEM

 

Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

• I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
• High levels of pain down the inside of my limbs (especially my left leg).
• Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?

Balance #OneWord2016

Last year I chose one word to guide me through the year… Enough.

I’ve recently found out from The Bloggess that there is a #oneword2016 Challenge and seeing I was already planning to choose a single word, I’ve decided to participate. The one word you choose is meant to be something that will help you focus on your main goal for the year.

Enough did that for me last year. There were many times when I felt I needed to do more or buy more items. Most of these times I remembered my word and felt better about only doing what I could or reducing the items I had rather than adding to them.

This year, I want to keep up the focus on the benefits I’ve received from Enough but focus more strongly on being able to increase (or at least better BALANCE) my activities.

I’m going to continue focusing on moving towards a simple, sustainable and meaningful life with a strong focus on finding ways to BALANCE my needs and wants. I’ll continue to try and single-task, try to get a good BALANCE of health, work, and social activities, and relaxation into my day/week.

If you haven’t worked it out yet, my word for 2016 is BALANCE.

I haven’t planned out the whole year but I have a lot that I want/need to achieve in the next 6 months so I’m focusing on that and trying to break it down into monthly and weekly activities…

In the next 6 months I need to:

• Complete my current consulting jobs for different local Council’s here in SA:
  • Biodiversity Trails – due end of January
  • Environment Action Plan 2016-2019 – due April/May
• Complete my Certificate IV in Training and Assessment – due by end of May
• Publish Foggy Frog and the Pain Gang Picture Book – we’re so close but it seems to take so long to get it all together!

On top of these tasks, I have several appointments as part of the ongoing management of my health and I want to have regular time with family and friends and build up my casual work a bit as well.

As you can see, there’s a lot going on so it’s going to be an effort to find ways to balance everything and continue to pace.

Tomorrow, I’ll give you an update on how I’ve been going with the No Buy Challenge the last few weeks. Let’s just say now that I’ve realised there were a few things that should have been on the exceptions list that I forgot, so I’ll be updating that tomorrow.

Do you have one word that’s going to guide you through 2016?

Merry Christmas and a Happy New Year

It’s Christmas Eve and celebrations have begun for our family.

During this time of celebration and busyness, don’t forget to look after yourself. I know that, for our family at least, it is definitely a very busy few days and so over the last few years I’ve had to learn a few ways to manage this.

Don’t forget to pace yourself. For me, this means no more than one or two social events each day (if 2, then one has to be a very low energy event) but even this is much more than I normally do so I’ve decided that I’m going to take a break from here until the new year.

2015 in review

Over the last year I haven’t done as much posting as I have in previous years, it has been the year of Enough. This has meant focusing on getting life more balanced and accepting what I have and what I can do, not what I don’t have and can’t do.

The top 3 most popular posts this year have been:

• The 100 Goal Challenge: My To-Do-List
• Living with Chronic Pain – Top 3 tips
• Pelvic Congestion Syndrome – What is it?

Two of these were written in previous years but are still quite popular today.

During the last year I have begun working again (even if only a small amount each week) and it’s been nice to be bringing in some income of my own. I’ve also been working with my husband and close friends to get the Foggy Frog picture book finalised (we should be ready to publish early in the new year).

I haven’t yet taken the time to sit down and reflect properly on everything that has been achieved this year or what I’m hoping to achieve in the new year and that is another reason why I’m planning to take the next week off. When I get back I will hopefully be able to outline better what it is I’m hoping to achieve in the next 12 months.

In regards to our 20 week no buy challenge, I don’t believe I’ll have any troubles with temptation as I’ll be focusing on my health and socialising for the next week or so but I’ll report on weeks 4 and 5 in the new year.

Merry Christmas and Happy New Year.

I hope you all manage to find at least something small to be grateful for and to bring joy to you holidays.

The Difficulty of Pacing: Work

I’ve been so excited to hear from you all about your thoughts on the most recent A-Z guide to a simple, sustainable and meaningful life. One of the questions I’ve been asked to share more about is how work fits in to pacing with a chronic illness.

One reader in particular approached me with her current situation and I could see a lot of similarities so I wanted to talk about the issue in more detail.

This lady has ME/CFS like me. I’ll let her share her experience in her own words (modified for privacy):

I’ve been working on trying to get my activity level up for a while now but have only been keeping track of my daily steps for about a month. At the moment I seem to be averaging about 4000-5000 steps a day which I’m really happy with. I think a couple of years ago I would’ve been lucky to average 1500-2000. My main problem at the moment is that my step count is very inconsistent. It can vary anywhere from 2000 steps a day to over 8000 a day depending on the activities I have on.

I’ve now been back at work for just over 3 months… I’ve only been doing short shifts (3 or 4 hours) but these shifts involve being on my feet and walking around for most of the time. This makes it hard for me to pace myself and on a work day I don’t think it would be possible for me to keep my step count below 8000. I then find that the day after I have worked I’m exhausted and my step count is very low.

The issue here is the inconsistency. It’s something I can relate to strongly, on the days I need to go out of the house I tend to find myself doing double or more steps than on the days I’m home and can pace myself. I’ve also found it harder to avoid crashes since I’ve started working regularly.

My exercise physio has made it clear to me that the most important thing in order to avoid crashes is to be consistent. As the reader above stated, this isn’t always possible. It’s difficult to maintain a consistent level of activity when you have to do more on certain days due to engagements you can’t (or don’t want to) avoid, things like doctor’s appointments, work, important social events.

One thing I’ve done to try and help with consistency, is to consider it more on a week or monthly basis (rather than a day by day basis). That is, like the reader above, some days I do a lot more but I balance that out by doing a less on the other days.

I’m not completely happy with that approach though because some days I’m doing less because (like today) I literally have no energy left. What I’d like to do is find a way to pace so that even though I do more some days and less on others, I’m not doing the less because of crashes. I want to be doing it because I want to.

Pacing is about setting base levels and sticking to them for as long as necessary before slowly increasing them.

Since I’ve started working again, I aim to do a minimum of 5-8 hours a week. I break this down into smaller time slots. Some days this may be an hour at a time, other times (like today) it’s in 5-10 minute blocks…

I’m lucky in that most the work I’m doing I’m able to do from home and sitting down, but I still need to pace myself. I need to find the right balance of mental and physical activity to maintain my health.

In an ideal world, we’d be able to only work what fits with our health but in some roles (as with our reader) there are minimum shifts that you can do so if you’re going to work at all it’s likely to be too much to start with.

In response to the reader’s concerns I’d like to offer some advice…

If it’s possible to take short breaks, or even just ask for a stool at the counter (if you’re in customer service), that would give you a chance to pace yourself even within your shifts. However, knowing the area you are working in I know that the workplace isn’t always willing to be that flexible.

From what you’ve said to me it does sound like you are doing the best you can in your situation. It’s great that you’re tracking your activity levels and maybe you could look at working out what your baseline is.

How do you pace?

If you work, how do you manage the difficulties this can raise?

P is for Pacing

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at P… Pacing.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

P is for Pacing

A form of budgeting time and energy, pacing is an important tool in our toolbox for a simple, sustainable and meaningful life with chronic illness (and I would dare to say without one).

I’ve written a fair bit about pacing in the past as I set my original boundaries, and attempted to stick to them and slowly increase them. Even though I started pacing over 2 years ago, it is still something that I struggle with.

Every time life changes I need to readjust what I’m doing and try to set myself some form of routine or schedule that allows me to pace the new activities in with my old ones.

For example, when talking about budgeting I mentioned that I am aiming for 4-6,000 steps a day, with 4,000 being my minimum. The last week or so though that hasn’t been the case. Something has changed – the weather, amount of work I’m doing, or the number of social events I’m attending – I’m not entirely sure what, but it has led to a set back in my step count and an increase in my fatigue and pain levels. I’ve almost halved my minimum step count and need to work slowly to build it up again after my symptoms settle down.

The example above is to do with physical pacing (exercise) but you can apply the same technique to other aspects of your life. This is especially important when trying to simplify your life.

The technique I’m attempting to implement at the moment to help me pace my activities and time much better is to set a rough daily/weekly schedule that will help me decide if I have to say no to an activity.

This post is coming in late, and almost didn’t happen today, because I have been trying to stick to this schedule and my appointments came first this morning.

Do you have techniques you use to pace?

On Routine and Pacing

I’ve mentioned many times about trying to maintain some form of routine and pacing as a way of managing my health. Now it’s something I need to refocus on.

I’ve got goals and dreams that I want to achieve within the next few years, and in order to do them I need to be as healthy as I can be. As I’ve previously mentioned, over the last few months I’ve begun adding work back into my life and this has thrown the routine I had set for myself out the window.

Why is it so important for you to have some form of routine?

In order to maintain a lower level of pain and more energy I’ve found the only thing that even works a little is pacing myself. Without routine it’s hard for me to keep my step count consistent and to actually motivate myself on my crash days.

I want to increase my step count back up to where I was before I crashed around Christmas last year (an average step count of 7,000). To do this I’m slowly raising what my minimum step count is for crash days. Over the last 3-4 months I’ve raised my minimum step count from less than 2,000 to 3,500. I’m raising in 500 step intervals every few weeks.

But what about the things that happen in life? You can’t plan everything!

No, you can’t but you can set yourself up so that you have some reserve for the unexpected while still maintaining a general routine on a day to day/week on week basis.

What’s your plan?

At this stage I’m still formulating a new plan for pacing and setting a routine that is flexible enough but I think it will look something like this…

8 – 8:30 am

Do some deep breathing, get up and do a short yoga sun salutation

8:30 – 9:30 am

Shower or bath (pain relief technique) and get dressed, rest if necessary

9:30 – 10 am

Breakfast

10 am – 12 pm

High energy work/housework/appointments with regular rest breaks

(no longer than 1 hour activity at a time without a break)

12 – 1 pm

Lunch

1 – 3 pm

Lower energy work/housework/appointments with regular rest breaks

(no longer than 1 hour activity at a time without a break)

3 – 5 pm

REST (tv or nap depending on energy levels)

5 – 7 pm

Make and eat dinner

7 – 9 pm

TV

9 – 9:30 pm

Pelvic Stretches, prepare for bed

10 pm

Bed

It’ll take me a while to build up to this (especially the getting up and going to bed at a regular time) but it’s important to me to push myself without going past my limitations.

Have you ever tried to set yourself a routine? How successful was it?

Life with Chronic Illness – Pacing and Routine revisited

Last week I discussed how pacing was one of the key recommendations from the International ME/CFS Primer for Clinical Practitioners. As has happened in the past I left my doctors appointment frustrated at the lack of understanding that medical practitioners here in Australia have about ME/CFS and treatment techniques.

When I brought up the topic of Pacing, it was clear that my definition and my GP’s definition were not the same, and I struggled with trying to explain what I meant by pacing.

To my GP (who has a background in Exercise Physiology/treatment), pacing means the same thing as Graded Exercise Therapy (GET). This means that he believes it isn’t about me pacing myself so much as me following what others (my exercise physiologist) tells me know matter how I’m feeling at the time. This technique works for those suffering from depression or other physical injuries, possibly even for Fibromyalgia, but it does not work that way in ME/CFS. Due to physiological differences, people who suffer from ME/CFS react differently to exercise and pushing when feeling bad can lead to crashes and irrevocable damage to their systems (not in all situations but it is possible).

The other thing that came up in my doctors appointment that makes me feel a little frustrated was that his idea of how I can tell when I most likely will be better was based on the time frames of the pacing/GET. Based on how often we’ve currently been increasing my exercise levels, it’s still going to be a few years before I’m anywhere near better (10% increases have been occurring every 2-3 months). This doesn’t help me with feeling like my life is actually moving forward. I feel like all my goals (in particular starting to try for a family) are just on hold and won’t be achievable at the current rate of recovery given that E believes (and to some extent I agree) that I need to be healthy again before we start trying and we’re not getting any younger.

Luckily my Exercise Physiologist at the University Clinic seems to be slightly more up to date with what treatments affect our system and has told me to do what I can when I can. If I can only do a little bit just do that and don’t push myself too far.

So, after pushing myself too far over the last few weeks, I’m back at the point of identifying my current base line so that I can re-initiate some form of pacing and routine in my daily life.

By having a better understanding of where I’m at I’ll feel more confident about saying ‘NO’ to things that are going to push me too far past my current limits and will feel slightly more in control of my life (to what extent I can be) – At the moment I feel like I’ve completely lost control and don’t really know where I’m heading.

As of last Friday, I’m once again paying close attention to what I’m doing, how my body is feeling and what I still have to do. I’ve given myself permission to take things extra slowly while I reestablish my base line and I will then (very slowly) build up from there. I am also trying to reestablish my morning, lunch and evening routines to help me stay on track.

What are my routines?

Morning Routine

• Up by 8 am (lately it’s been 8:30 – 9:30 before I’m out of bed)
• Journal
• Shower and dress
• Breakfast
• Sort animals (including sweeping floor)
• rest
• Yoga (and on Tuesday, Thursday and Saturday my Exercise Physiologist workout)
• meditation
• blog/read/write/draw (MENTAL ACTIVITY)

Lunch Routine

• lunch at 12-12:30pm
• walk or bike ride (I’ve been taking photos of the nature around us (see gallery below for some) – it’s been such nice weather lately)
• rest/meditation

Evening Routine

• All electronic devices off by 8:30pm (including TV, phone, computer)
• Bath/Shower
• Read
• Meditation

Although I feel extremely guilty about having 2 baths/showers a day I’ve found it’s an essential part of my pain management strategy. When I skip one of them my pain levels increase by quite a bit. To alleviate my guilt a little I am trying to bucket out bath water whenever I have the energy to do it so that the water is reused to water the garden.

In between these routines I fit in any other activities that need doing such as appointments and my housework. Most days the morning routine takes me all the way to lunch time by the time I add rests in between short sessions of the last activity.

On Wednesdays I tend to have doctors appointments in the morning (and sometimes the afternoon as well) which replaces my mental activity and usually means the rest of the day is just resting.

How do I plan on Pacing?

Pacing appears to be key, both to managing my pain levels (from the Fibromyalgia and Pelvic Congestion Syndrome) and my energy levels so as to avoid or minimise crash days.

Over the last few months my number of crash days (where I can’t do much at all – I may push myself to do my exercises or some housework/an appointment – and spend most the day on the couch resting) have increased dramatically again. I thought it was as a result of increasing my Lyrica dose, but as I’m coming off that (I have a week to go) I’ve realised that even though that has played a small part I’ve also just been doing way to much and missing my rest breaks because of how foggy I’ve been lately. The Lyrica also seemed to have been blocking my tell tale signs that I’ve done too much, such as my sore throat and the slight increase in pain levels.

I am going to be pacing in two different ways:

1. Over a week or longer period I will be making sure my appointments and social events are spaced out enough that I have time to rest in between them. This will mean learning to say no to some events and learning to prioritise what is most important.
2. Throughout each day I will be listening to my body and adjusting what I do according to my symptoms. I will try to alternate physical and mental activities, as well as making sure I have rest breaks whenever my throat begins to get sore or my pain levels begin to rise (I’d like to do it before symptoms occur but I don’t want to go to the extreme of saying I’m going to do everything in 15-30 minute blocks – this would be the next step if I’m not able to pace myself based on listening to my body).

How do you pace yourself and do you have routines to make sure you manage to do the most important things?

ME/CFS Primer for Clinical Practitioners (2014 revision)

As many of you would be aware, I’ve been struggling a lot lately. Between the process of coming of the Lyrica and an increase in social activities I’ve really overdone it the last few weeks.

My doctor is starting to reach the end of his ideas for what we could try to help me manage my symptoms and lifestyle with them so I have begun doing more research into what is out there and what I should be doing.

The other week one of my friends, who also suffers from ME/CFS sent me a link to the newest primer for Clinical Practitioners from the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Click to view document

This document outlines the most recent research, diagnostic and treatment options for doctors treating people with ME/CFS. I found it useful to see where research is at, what drugs and other treatments are recommended for management.

It has reminded me that I really need to get back into managing my lifestyle, pacing and learning to say NO to things that aren’t helpful for me.

I have begun doing this with the decision to come off the Lyrica. I’m now about half way through the weaning off process and, although pain has risen slightly and I’m finding I’m having a rough time emotionally right now, I feel this has been a good step for me.

My brain is starting to clear again, while on Lyrica (especially at the higher doses) I was struggling to think at all. Now I find my thinking is back but I’m still struggling with word retrieval and a few other brain fog symptoms.

I am now able to once again feel when my body is saying enough is enough and, even though I haven’t been doing well listening to it so far, this is going to be beneficial as I ramp up the pacing again. On the Lyrica, the sore throat and the increased muscle aches weren’t there and I think that is part of the reason I kept pushing myself to crashing point.

When I see my doctor tomorrow I’ll be discussing the following ideas/problems:

• Pacing
  • how to best balance pacing with still having quality of life (E is concerned that if I pace too much I’ll be limiting my quality of life)
  • Housework as part of exercise routine
• Revisiting a nutritionist/naturopath to make sure that my diet is the best it can be for increasing my health and to find out which supplements I should be taking.
• Emotional support
  • I’m struggling with the lack of control I have at the moment with where my life is heading. I keep getting worried about never being able to start a family because of my health.
• Getting a referral to another gynecologist for a second opinion on the Pelvic Congestion Syndrome treatment
  • The pain has been increasing for the last month or so and Depo Provera isn’t healthy to remain on long term so I need to find a different treatment option.

If you, or someone you know is suffering from ME/CFS I would definitely recommend taking a look at the Primer above and even sharing it with your doctor/medical professionals.

What treatment options do you use for chronic fatigue or pain?

Do you think this primer would be helpful when talking to your medical team/doctors?