Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I'm off at the moment so I'm not sugar coating anything for them. I have a lovely boss and lovely colleagues who are very supportive. I worry that it's going to take me a while until I'm fit to go back to work though.

I still automatically answer 'fine' when asked. My hip consultant asked me the other day whether I was otherwise well. Automatically the words "Yes, fine" tripped off my lips. Then I laughed at myself and had to explain the TN.

I've caved in today and am not waiting the 26 weeks that it might be til I get to see a consultant. I've phoned the same man that I would see on the NHS and have arranged to go private just for my initial appointment. I had a lovely chat with him and he explained some things. His first available appointment was next Thurs, but after speaking to him he moved my appointment forward and is seeing me the day after tomorrow.

If he agrees with the GP's diagnosis, then he will refer me from him as a Private person to himself as an NHS person (!) and put the request for a special MRI (with contrast dye) straight across to Walton. It will be done on the NHS but will be done a lot quicker than it would otherwise have been.

I'm almost hoping it finds the cause that can be fixed via surgery as I'm getting nowhere with the medication at the moment.

As I'm a teacher, I'm forever bumping into parents of children in my school. They ask 'How are you?' and I automatically say 'Fine' then worry that they are thinking why aren't I in school then?

I'm having a craptastic time.

I've had the one and only medication that managed to control my RA in nearly 5 fucking years discontinued due to side effects. I've got damaged joints at the grand old age of 25, so even if they do find another drug that suits me, I'll still be in pain and disabled forever or until the NHS deems me suitable for joint replacements. It's going to be a while before I start another anti TNF, have to apply for funding, present my case and blah blah blah.

I'm just so miserable, so I'm sitting here crying, telling a bunch of strangers my woes.

Sorry to hear what you are going through, candy.

Candy I am so sorry!
2Kids perhaps we need a stock reply other than fine, like getting there, making progress. Any ideas? I think fine can mean a multitude of things, including 'thanks but absolutely dreadful but I don't want to talk about i't.

Sounds horrid, candy :( Afraid I can't offer anything but some ::hugs::

I didn't know it could work that way, 2kids! Very useful to know... And I think it says a lot that he moved your appointment up so quickly; it seems like their ought to be an 'hey, this one is really urgent' track on the NHS too.

And I have a reflexive 'fine' as well. My problem with any of those alternates, magso, is that people asking don't know there are any problems at all. So I don't know what to say, whether to hint at issues at which I might have to explain everything, as I really don't know how to do it halfway, or maybe would they just let it go? or pretend everything's normal.

Hello everyone, I posted months ago, but have only been lurking since... Since then I have been referred for a hip replacement and got a blue badge, so things are changing for me...

Sorry things are so rubbish for you at the moment, candy. Do you (and does anyone else?) have Health Trainers in your area? In mine, the Health Trainers are a team who support people with long term health conditions, and help them with things like accessing other services, identifying goals, pacing, diet and exercise. I saw a fantastic HT who herself has RA, and she introduced me to Mindfulness. This is an approach to pain management through breathing techniques, relaxation and (for want of better words) meditation and being kind to yourself. I use it badly and erratically and yet it still helps. :) The HT has been able to wean herself of most pain meds by using Mindfulness and changing her diet. I think it has a lot of potential... I'm interested to know if anyone else has tried it...

Also candy, you mentioned soft tissue therapy a while back... Can you tell me more, please?

Magso, I've started to use "Alright" and "Getting there" to some of the answers.

Raggedy, he knew that they'd given me an appointment next week, then he asked how I was getting on and when I told him I was not managing well and was off work, that's when he bumped me up to this week.

I expected to jump the queue to see the consultant but then have a long wait for the MRI, but he seemed to be saying that whenever they came across TN it was automatically classified as urgent and would be rushed through.

Hope he lives up to his promises, that's all!

ME/CFS people, vote to win £2000 for Invest in ME

I don't like to say "getting there" or "making progress" anymore. I've been ill for too long to want to say that. But I think people can see that I am ill now, so maybe they don't expect me to say it.

I find I say "I'm fine" to those people who tbh, are not really interested but to those that I've said explained more to, I end up saying "up and down" as every day is up and down but also when I have said 'not feeling so good today' I get told I ought to go back to the GP, I find this hard as there isn't necessarily anything the GP can do besides throw more meds at me!

fuzzpig you wrote - "I felt different and inferior, it shaped my life in a negative way. How different would it have been if I'd known what was actually wrong with me?!"

TrinityRhino said similar in chat

So even if there is no treatment, early diagnosis is important, because it can stop people feeling like this.

autoimmunity in POTS

Thank you for the support. I feel really guilty and silly for posting that blab when things could be so much worse.

flow I know a fair bit about mindfulness, I do try to practice it and I'm actually looking at meditation to help me cope with general stress as well as my health problems. I'm not sure about a health trainer....how would I go about finding one please?

Soft tissue therapy was amazing! It's a type of massage. Both my shoulders have joint damage and they're both stiff, my right one was barely moving but he released it within minutes. It was pretty incredible. I'll have another session next week, I think, it was quite expensive.

This is what the site said:

"Soft tissue therapy (STT) is the treatment and management of soft tissue injuries, pain and dysfunction of the neuromusculoskeletal system.

The use of massage, trigger points, myofascial therapy and assisted stretching improve tissue quality and function, helping to relieve pain and discomfort by realigning deep layers of muscle and connective tissue.

The benefits of soft tissue therapy include:
•Improved lymphatic flow and circulation, aiding the removal of waste products such as carbon dioxide and acetic acid
Muscle and skeletal alignment
•Reduction of swelling and muscle tension
•Improved tissue flexibility helping to reduce the effect of delayed onset muscle soreness (DOMS) and the prevention of excessive scar tissue after an injury
•Reduces the risk of sustaining an injury"

Thank you kate. It's hard to find a balance between being glad I now understand my past, and resenting the fact nobody listened to me sooner!

Tough week here. Definitely struggling now I'm back at work - Monday late shift was horrendous and it's thrown out my whole week so far.

Thanks candy, that's interesting. I might see if I can find someone who does that near me. I have arthritis and hypermobility syndrome, and my soft tissues are sore and cramped all over my body.

The health trainers here are part of adult social care services. You could try googling your local authority's name plus 'health trainer'... But I guess they could be called something else... Maybe have a look at your council's web pages for social care...?

Thank you flow. I'm intrigued about health trainers, I am a (nearly qualified) social worker and I've had many clients in the past who would have benefitted from this, I wish I'd known. Like you said, the therapist
explained that when you have pain, your body goes into high alert and the soft tissues tenses up. If you're used to being in pain, it goes into high alert much quicker.

Yes, I can see that. The physio and sports masseuse told me some of my muscles were in chronic spasm, but I didn't really know what that meant. Recently though, I've been spending loads of time in the sauna and jacuzzi, and eventually I felt muscles starting to relax. Ones that had been locked solid started to twitch and loosen - they hurt, but in a different way, and my overall pain dropped significantly. It has given me hope that some of my pain and mobility problems can be eased. I was feeling that I was on a permanent downhill spiral, so that's good :) Now I know some of my pain is muscular, and I may be able to do something about that :) I'm on the lookout for things like this soft tissue therapy that might help.

Its good to have hope for improvement Flow.

On the same theme, I went to an introduction to Yoga for beginners short course yesterday- all of us parent carers and mostly in poor health and extra stiff, ourselves. We concentrated on the relaxation side - breathing and gentle stretches. I think yoga might be a useful thing to do - and just at the moment my hip(that was cramping up) is behaving better. I had a shoulder massage a few weeks back (with massage angels in a shopping centre - strategically placed outside the lego shop allowing both relaxation and watching autistic ds as he played with the lego). She said my muscles were extraordinary tight! It was painful but lovely. I have a similar feeling today after the Yoga yesterday, and I slept moderately well too. I have been attending a body balance class which is a sequence of mostly yoga and pilates moves to music followed by a relaxation session. Its only 50 mins long including the relaxation so I can cope with that, but I had been doing some of the Yoga incorrectly so it was good to start from the basics.
I have a massager machine, so have started to use it to try to loosen up my shoulder muscles before bed. Its not the same as a proper massage. Perhaps we should send our Dhs off to learn therapeutic massage- tailored to own individual needs of course! I don't know what the difference is between massage and soft tissue therapy, but I presume it is the therapeutic knowledge of the practitioner. I used to have a chiropractor who did deep tissue therapy and it was brilliant. Shame she moved away. My back was much better behaved during that time. My currant chiropractor also calls herself a myofascial therapist.
Fuzzpig, I hope you can recover enough to catch your breath. There are bound to be set backs, so don't be too hard on yourself as you adjust to the changes.
Kate you are so right. Not knowing what is wrong for such a long time is harmful.
Yes I think most the time 'fine' is the stock reply, and if you say anything else you can get entangled trying to explain, when you don't want to.
The concept of health trainers sound excellent. I found out a local gym runs special sessions with trainers for people who have had a stroke and finished their physio. A neighbour ( young man) will be glad to know. Perhaps the concept is growing and may extend to us!

Today I walked up a (small bit of) hill in the sunshine! Something I have not been able to do for years! Today everything is fine - I would not want to say anything else. Hope the warm weather lifts us all!

Soft tissue therapy and health trainers sounds really interesting. :)

Just updating - Had my first neuro appt today. The chap was fab. Really down to earth and friendly.

He checked me over and asked a million questions. He agreed with the GP that it sounded like TN (about as close to an official diagnosis as I'm going to get until more investigations are done).

I'm going to tomorrow to see him at his NHS clinic, then the paperwork for the MRTA scan (special MRI) goes to Walton on Monday and I should hear from them soon and have a scan in the next few weeks.

Very glad I took the bull by the horns and went private!

That's nice and positive, magso. I should try to think positive more often!

I'm exhausted, but I've realised this is the first week I might actually do a full work week since the new year! Every other week I've had to go home early at least one day because I was so ill, and then there was last week when I took two whole days off. But even though I still feel completely beat, maybe it did some good. I hope I can make it through tomorrow! It feels pretty sad to celebrate about just working regular hours, but I kind of feel like I'd like to. And thinking that will help get me through tomorrow...

That's a really good start 2kids. The neurologist sounds like the right person, so glad he has got things moving.
Raggedy I think I have had a better week because I had a week off last week. It makes such a difference, even when I only work very part time. Hope you manage tomorrow without being too exhausted.
Interesting about POTS and autoimmunity Kate

I did it! I made it through the week. Then I did one thing too much and went to toddler group on Sat with DD (but even so, I really think that is good for her, and probably would have gone anyway. I hate that we can do so little with her), and ended up having a big row with DH when I just burst into tears when I came home because I was so tired :( Oh, right, raggedy here with a name change...

And I had tried to share my pride in getting through a work week with DH, and he didn't get it all. He came off sounding a bit mocking and it made me feel even worse. Although on Sun we had some good talks, but I'm still feeling like he just doesn't get things.

I find it so frustrating because you'd think that with CFS/ME himself, and even worse than me, he would be understanding. But it seems he's just incapable of being sympathetic to having to do things you don't want to/face situations you don't want to. For example, I feel really bad when I end up asking him to watch DD so that I can nap on a weekend, because I don't get to see DD much during the week and I want to spend as much time with her as possible, so I hate using my DD-time to rest up for the work week. But his answer is "Don't nap, then", but when I say that I'm so tired I can't do anything and if I don't nap I'll be useless at work, he says, "Well, then nap." Almost like 'make up your mind what you want!' when what I want is just to share my distress at the way things are. Or rather, I want to not nap and not be tired, but that's not one of the possibilities, which is why I'm upset! I don't see how that is so hard to understand. Sorry, probably not quite the place to go on about domestic issues, but I don't really have anywhere else to vent.

Well, back at work today. Let's see if I can make it through two weeks in a row? Early days...

((Murmation)). I get what you mean. Its a common male failing (IMHO) to be too logical and not hot on empathy! DH never gets that either - he will tell me the solution (to nap) and completely miss the point.- although as time has gone on he has come to understand better.
Well done at getting through the whole week. Sorry the week end was stressful. It must be very difficult with both of you unwell, and a young DD.
Ds likes me to sit and watch TV with him when I am too tired to play or take him out.

That spoon theory explanation is really good, I often use it :)
I have noticed that there are comments on here about CFS. I have been suffering for over 8 years now but finally got diagnosed with postural orthostatic tachycardia. I have been treated for hypovolemia and I am so much better, not fixed but much more able to live a normal life. I would recommend anyone with CFS to investigate this as not many GPs are aware of it. All the very best to all the spoon theory followers.

veeek, that is interesting. I had to google hypovolemia, but I see it means low blood volume? What is the treatment you are on?

The same doc who diagnosed me with dysautonomia (although unspecified, I'm not sure he knew about all the different kinds) also told me I had low blood volume. I'm now on treatment for the dysautonomia, and don't go tachycardic with mild exertion anymore. It has made a major difference to my life, but my main fatigue problems actually started quite a few years later!

Thanks, magso. Sometimes watching DD literally jumping around (she just learned how to jump!), I wonder how it is possible for someone so small to have so much energy when the big people can't do anything. DD does like TV, as long as it is Peppa Pig :) I try not to do it all the time, but if I'm with her all day, we'll often have a late afternoon down-time in front of the telly.