Hi Rose - whoops, overlap! As often, I took quite a few hours to finish - breaks and task-switching… Interesting to hear you call it rollator, cos that’s what we call it in Germany. Wikipedia says it was originally a brand name, then turned into a ‘genericised trademark’, and these wheeled walkers are the main types of walker here in Europe. I wonder, @SueT, if you use the term in GB?
Hello Sue, first off I’d like to say I will pray for you to find solutions and comfort. I to suffer from the leg tightness, rib pain, it feels more like my connective tissue is all bound up and twisted, I have the hot body and I don’t mean hit like sexy hot, just want to make you laugh. Have you tried stretching at home? Just tiny little stretches? I found this really helps some of that tightness release. As far as the wheelchair, I say you know your body best, if you feel you need it sometimes then use it, it you need it all the time then use it. Listen to your body and love it, I know it’s hard to believe with all the pain, but I believe your body is doing it’s best for you. Smile and don’t give up keep on pushing forward… 
Hi Rosebud74,
Thanks for answering my post. I will have to check into the walker-or rollator as you also called them, only 1 store here that even does anything to do with that sort of thing.
As to seeing an OT, that is not even on the cards these days, our health service is in bad state, so no idea when it will improve. I can ask when I see the doctor though-last time I asked about a wheelchair (few years ago) was told they don’t lend them out.
SueT.
Hi JayCS,
No, I haven’t heard walkers called rollators here in GB, will have to ask when I ever get to the mobility store and see what they say about it.
SueT.
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Hi JayCS,
I’m the same with telling my husband about all the pain, I’m sure I drive him crazy. He tells me to ‘walk upright’ when sometimes I find that impossible. Also tells me not to concentrate too much on it-and it will go away-yet to happen!
I really don’t have any mates and acquaintances aren’t interested, my sister just laughs at me when I struggle to walk, then tells me to go to the doctor-which is not much help these days. Doesn’t realise that just because I look ok, I am still in pain while not even moving. Maybe I should carry a sign saying how much pain I am in Lol. As for cycling, wouldn’t like to do it around here, it’s only a small town and the pavements are very narrow and would not like to ride on the road with all the traffic.
I find sitting too long in one seat as bad as anything these days, we had to get a new sofa as our springs on the old one gave up, but this sofa is not too good so need a cushion at my back still, it helps a bit.
Anyway, not giving up, I can stand the pain most days I guess, except when we go out to do a bit of food shopping, it’s always much worse later after that.
Hope that you are doing ok today.
SueT.
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Hi SueT I live in Buckinghamshire, it seems like it is a post code lotery if you get help with things. With regards to the rollator, which is mainly what it is called in magazines and shops that sell things for people with a disability. When I had a referral to the OT I was told I was not disabled enough to have one. In the end I bought my own. It has proved so valuable for me especially with balance problems and also the fatigue that when I am out I can just sit down and recover. Now I do not have the confidence to go out without it!
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Hi Rosebud74,
Definitely a post code lottery these days with trying to get any help at all. I had a look on line about the rollator and think it might be ok but haven’t made it to the mobility store here yet to have a look. It’s only about a 15 minute walk away but it’s hard to go anywhere. You were told you were not disabled enough to have one? That is disgraceful, I bet those people would want one if the had fibro. I get tired when out but it is more the pain than anything else that gets to me.
I live in Cirencester, so a bit away from you Lol. I haven’t yet met anyone else that has fibro, would be good to find a few to maybe meet up with, but this site is pretty good at having someone to chat with about things.
Take care, hope you are having a reasonable day.
SueT.
Yeah, hard for anyone to understand what we don’t understand ourselves. Of course there are quite a few grains of truth and it is a bit of a help to be reminded of things which might be good for us, or are sometimes so.
I do sometimes need to be reminded to walk and sit upright, and if I do find that impossible then I need at least to stop sitting hunchbacked, so better to twist-stretch or lie down.
Distraction actually doesn’t help me that much, it depends - better when it’s less pain, whilst when it’s bad it’s better for me to go into the pain, strange as that may seem. I guess he knows that the pain then won’t actually go away.
I hope he realizes he can only make suggestions and can’t really know.
Yeah, I’m very lucky having had pretty long term good mates, good, understanding people… Sometimes helps me when people aren’t interested. Laughing and telling sounds like overtaxed and doesn’t know what else to say. If people do that, I laugh too, I’m actually laughing all the time at my antics trying to get up and down, how long I need to move and walk. Dunno if going to the doctor ever helped, me not much, but at least I get specks of help, from what I hear you all don’t get even that. To get people to understand I practice more and more to exactly describe when I’m in pain and when I’m not, and use the pain scale and the images of flu, broken battery etc. But I don’t need them to understand that much. Pity cycling doesn’t work where you are. As cycling is important to me, I’d always be somewhere where I can cycle. Our main roads are fairly dangerous, cyclists are killed once in a while, but I’ve long stopped cycling there. Problem in the UK is I think car drivers aren’t used to cyclists, and aren’t considerate in any way, a shame. I’ve only cycled in moderate sized UK towns where there were cycle paths and wide pavements. I’d’ve thought there are parts even of a small town in which there is less traffic tho?
I can never sit on any sofa - only 3 or 4 minutes. And sitting only twist-stretched anyway. How long do you take to go food shopping? I live very close to / between 2 organic food shops, and if I time well when no one’s out and about I can manage there and back in 20-30 minutes. The other day I bought 4 heavy bags full of stuff in
4 minutes, took 15 minutes all in all, cos it was just before 9pm closing time, no one else was there and of course someone was sitting at the check-out cos they wanted me out. Certain things like drinks and apples I can put directly into the bags and then just tell them what and how much it is without getting it out. Only realized that when they suggested it to me themselves, and now try to remember to do it regularly…
Hope you’re doing fairly well, considering?
Hi Jmarie,
Thanks for your answering my post-and any prayers are gratefully received. Sorry to hear that you suffer with so many pains as well. I agree, it does feel like all the connective tissue is twisted-and very painful. All across my back and stomach are the worst at the moment, feels like I am dragging someone with me Lol. I do stretches but they don’t seem to help me so far and been doing them for a while now.
I haven’t decided about the wheelchair or walker yet, but will as don’t think I will be going out otherwise. I do smile, not as much as I used to-there’s not much to smile about.
Hope you are doing ok.
Hi JayCS,
I don’t think anyone can understand what we go through with pain, and doctors don’t seem to have much of a clue either.
I do try to walk upright then find myself listing over again, hard to keep it up. I do cross stitch or jigsaws, or reading to try to forget about pain, doesn’t work much anymore. My husband says to try to breathe through it, and I do try, but get dispirited when it doesn’t seem to help any. He says he understand what I’m going through, but don’t think he can appreciate the amount of pain. I feel like I’m dragging a weight along with me all the time.
Being in my 70’s (don’t tell anyone Lol) most of my friends have now passed on so not many people to talk to and if I do try then they think they ‘know it all’ and ‘why don’t you go to the doctor’ or ‘why don’t you exercise more’ or ‘take painkillers’ which gets more annoying over time. I haven’t found the doctor much help so far, so no idea what my next appointment will bring. Have seen too many cycling accidents on the news to even want to try to ride on the road here, and yes, it is a shame. A lot of the roads here don’t even have a pavement to ride on and if you do then pedestrians don’t like it.
As for food shopping, the one shop is about 5 minutes walk away and then about 20 minutes to shop and then walk back. The other is about 10 minutes away, same time to walk round the shop and then walk back. Sometimes we have a coffee and a sit down before walking back. I always take a soft cushion with me for my back, café chairs are not designed for comfort.
Thanks for all your help and support, much appreciated, hope you are doing ok.
SueT.
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Not sure where I should put this, but I saw my doctor the other day, after a 4 week wait. She did listen to what I told her, when I said about my back feeling like it was on fire, she suggested using something from the freezer to cool it off. Wasn’t bothered about my stomach. Asked if I felt down or low, and I said well, yes, when you have pain all day and can’t stop it-of course sometimes are worse than others. She offered me talking therapy, but TBH I don’t think talking to some stranger who probably does not have much idea of fibro will help. My legs aching she put down to the fibro-as that affects muscles and we do have muscles in our legs! Anyway, I now have to wait 5 weeks just for a blood test just to check if anything else shows up. On the whole, not too impressed but what can I do?
SueT.
A good psychotherapist - not easy to find - will be all the better to help you change your attitudes towards your pain because they are a stranger. The therapy type I’d most recommend is ACT, acceptance and commitment therapy. If anyone did try it, I’d read up on it and tell your psychotherapist about it, or tell those deciding who you’ll get (ha ha, I know…). What we do there is not to decrease the physical pain, of course! It’s putting it in it’s place, so it stops us getting into anxiety, depression, pain about the pain. That mean the pain has less infuence on our life. We can be happy despite pain. That’s me. Whether I can’t move at all, I can’t sleep, I can’t eat much, I have a pain of 6, I’m very happy, happier than I’ve been before in my life, where I didn’t know how to challenge my attitudes.
What we do have to watch out how people mean “push thru the pain”: We have to educate them, because that is often not sensible and is contrary to “how fibro works”. We have to find and keep to our limits. And if we are limited 5% in our physical movements, then we enjoy those 5% and find things to do mentally. But we don’t do activities for an hour a day (that’s sometimes my limit) if that will cause the pain to go up to a 5, while it would stay at 3 if we didn’t.
But what is possible is to say: I know this is gonna cost me a 6, and may take a week or month to recover, but it’s worth it. I’m planning this, a talk, and making sure I do nothing else that day. What is also possible is to push thru a pain that doesn’t increase. If it’s a 5 if I push thru and goes down to 4 when I stop, whilst it stays on a 4 if I don’t do something, again that’s worth it. So it depends… And this could also be meant with “pushing thru”.
Once a therapist has understood those basics, they can help us manage that. They are trained to learn and empathize with people and help them develop their coping abilities.
Anyone who says they already do that, like they’ve read and implemented Kabat-Zinn or books about Radical Acceptance and done therapy, so don’t need more, I’d answer:
Well, I am that person. But I still did a 7 week online ACT course. Partly I corrected, educated them on certain problems. But it was already pretty good. And towards the end there were some things which I hadn’t implemented consciously enough. I now make it a point to fairly regularly note my thoughts and emotions about how things are going. So even that person can build and practice these things. We need it.
“Radical Acceptance” isn’t like normal acceptance, it’s implementing the Serenity Prayer: changing what we can, accepting what we can’t fully, embracing it. Easier said than done? Precisely, that’s why we need to do these type of courses. Because if they’re good, they build up slowly, make ourselves conscious, how we get into and “make” our own troubles and worries, instead of just letting go… And if you can’t get ACT read up what various people say about “Radical Acceptance”, that may open doors.
Hi JayCS
Thank you for your answer to my post, very helpful.
The doctor gave me the web page address of the therapy she was talking about, but it is not a good site and does not mention ACT or much of anything, except how to get in touch for a 6 week on line zoom course. I don’t do zoom or anything like that, it’s just not ‘me’. I am going to do what you suggested and look up any ACT on line and see if I can get to read and understand what people have to say about it all. With our health service in dire straits at the moment, it’s hard to get anything these days.
Thanks, SueT.
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Oh dear, yes, I know, it’s gotten terrible in the UK the last years. Someone I know after a small heart attack months ago may now be getting a “rehab”, which has already been postponed twice and probably only means an hour a week or something, I’m really wary what that’s gonna be. When I try communicating that to people here in Germany they can’t imagine that. Here a rehab means in clinic for at least a few weeks directly after coming out of hospital, and then getting daily treatment out of clinic for a while. What a world of difference.
I can well understand you not doing any zoom. For me the reason is it’s way too much peopling / socializing, much more of a strain than physically meeting people, and even that I can only manage for less than an hour. I’ve got a bit more used to it if I’m mainly listening and it’s in the daytime. And I do do it if ‘forced’, but preferably 1 to 1, less than an hour. Yesterday a 2h+ meeting in the evening wouldn’t at all have been possible for me in person. I had to listen, but also concentrate and make notes and sometimes ask questions. I only put my video on for a second, so they know it’s me - I never write my full name either, just one letter. And when I put things into the chat others were able to communicate them if necessary (sometimes the chat was projected on screen in the in person meeting - which of course is still a heck of a lot of stress. After an hour or so, I was just lying on the floor with eyes closed as much as possible, and am needing all day today to recover…
Altho the night would have been difficult anyway, cos I haven’t got control over my bladder pain and my experiment with 3% of T4 is not only quenching my appetite and increasing blood pressure and pulse, it’s also giving me night sweats that I’ve been having to change my bed clothes 4-6x per night. But I’m upping my GABA for the bladder and stopping T4 for a while, maybe just taking 1% or once every few days.
A few pointers - people who’ve used/propogated “radical acceptance” are (historically: Buddha, Stoicists, and in my opinion also Jesus/Paul,) Marsha Linehan (DBT), Stephen C. Hayes (ACT) both in the 1980s, Jon Kabat-Zinn ("Full Catastrophe Living, 1991), Tara Brach (TED Talk, Book on it 2003), Lady Gaga on Oprah. ACT has many studies on it and a high reputation. In Germany an 7-week online course is recently being paid for by insurances . … No longer being a victim of suffering… using mindfulness… “pain won’t kill us”… “learning to separate pain from suffering”. (these aren’t necessarily the mantras/phrases that help me personally most, but apparently others…)
Hi Sue here in Buckinghamshire there is an organisation called Healthy Minds that you can either refer yourself or your doctor can refer you. Do you have anything like that in Cirenster? If so it might be worth contacting them. I dont know if it is just a Buckinghamshire thing or not. Anyway thinking about you and I hope you get some help soon that will enable you to manage your condition in a better way.
Hi JayCS,
I don’t things will improve here for some time, if ever, they seem to be trying to force people to take out private insurance-which we can’t afford, like many other people. Covid seems to be on the rise again and our surgery is telling people they are too busy, and if it is ‘urgent’ then call 111. That’s not much use as they usually have a script they use and tick boxes.
I have been trying to get more info about ACT and am still looking on line, but they don’t seem to be doing that anywhere near where we are. I will keep trying though, but I think any sort of zoom talk is out for me. Found a few places on line but you have to pay for it, and after paying for the Bowen thing, I am a bit wary about more money going out and getting nothing back to help. Also not into on line talking etc.
I wanted to get someone to do an allergy test to see if maybe things I am eating is making my symptoms worse, but no one here is doing it-they all seem to have disappeared! I have dropped things from my diet, but nothing seems to make a difference.
My husband got Boswellia tabs for me to try and have been taking them for a week or so, but so far not helping, he says I give up too soon, so will continue with them.
At least the sun is shining at the moment, but still chilly.
Hope you are having a reasonable day.
SueT.
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Hi rosebud74,
I looked online about Healthy Minds but as far as I can find out it is only in Worcestershire and Herefordshire and your area, annoying as we just moved out of Worcestershire! I’ve looked about here but so many things have closed down/disappeared it’s getting worrying. I can’t even find someone to do an allergy test here, yet it’s supposed to be one of the best places to live in the Cotswolds.
I will keep trying, maybe will find something/someone soon, fingers crossed Lol.
Hope you are having a reasonable day, at least the sun is shining here.
SueT.
Yeah, NHS used to be quite a good system, some say, I don’t really agree, from the little I know/hear, and private or leaving you alone feels a bit US-style. Sort of if you’re ill, it’s your problem, maybe even your “fault”…
CoV is definitely on the rise here, everyone who never had it is getting it, and others for the 2nd or 3rd time, despite everyone being vaccinated. I believe my new symptoms were overreactions to T4, but also my wife’s CoV. But my GP avidly maintained CoV is finished. Which is absolute rubbish considering the severity of symptoms many around me are getting. It’s taking them much longer to get back to starters than after a flu. It’s not as bad as it was, but that doesn’t mean it’s easy.
Just to clarify: The online ACT course I did wasn’t talking to anyone in person, just 2 phone calls of 15 minutes, everything else was via writing. I doubt you’ll have one of those either tho. So in your situation I’d mainly read the books I recommended and practice the things there. Or if you’re like me use youtube, just had a quick look and saw lots, incl. long 1 hour ones, e.g. from DocSnipes - might have to get used to her style, but she seems to use good images, explain well etc. Trouble is that all isn’t interactive. So for interaction you’d have to come back here ;-P.
Hope your Frankincense works without side effects!
Sun/chilly: I’m more and more weather independent and realizing one of the few things I can do pretty well is gardening. I think because of the “sun” and the fresh air. That seems to counteract the strain and the rain. So with 2-3 hoodies on, rain legs and long johns and switching (as my body needs) between outside and inside tasks (cellar, shed) I spent a few hours in the rain today, without getting wet. Only occasional rests.
I needed that, cos my new symptoms and other things were getting to me. My wife chided with me a few days ago for “being in the garden too long for my cough”, but now she’s catching on that this is really good for me. Like yesterday she asked if I could go for a walk (which means I’d need to cycle slowly next to her), and I said no, not up to it, but I could do something in the garden, and so she came to me while I was working in the garden… Gardening is also making me happy, cos (like I always like to do) I’m making it into an art. “Painting” a wild landscape. Like today I used dry curved conifer branches to decorate a big stark metal garden gate, which is quick, no strain, and like painting. Tomorrow I’ll be looking for colour contrast, like some light-coloured very flexible long twigs which I can form an oval with (which I’ve deliberately spared in the middle of the gate). Hope it’s practical, we need to open it to get bikes thru. But my first tests were OK, and actually the gate is much quieter now, which is nice and peaceful, it used to make a dreadful clatter.
So yes, a great day, all things considered - and hope yours was OK too…!
Hi JayCS
Yeah, NHS used to be good but these days they do operations they really shouldn’t like ‘tummy tucks’ and ‘boob jobs’ things like that. Another concern is there are just too many people in our little country and more coming in all the time. What with that and now junior doctors striking, makes me worry over the future as we can’t afford to go private.
Not much mention on covid lately, but last I heard it was on the rise again and people were going to be offered another shot. So, don’t know why your doctor should think it’s finished. It always seems to be mutating.
I haven’t found anywhere here that does the ACT course so will have to keep looking, but will go to you tube again and check things out.
Not too sure if I have any side effects form Boswellia/Frankincense as my husband gave me his cold he had last week and am just not feeling to good. Sneezing seems to have stopped but now have been left with a bad cough that I can’t seem to shift especially at night so sleeping much less that usual, which isn’t much to start with Lol. I did go for a short walk yesterday as we had sunshine-very nice, but guess it made things worse for me. But when you are sitting inside and the sun is shining, you want to go out Lol.
How is your ‘painting’ a wild landscape going?
Hope you are having a good day, maybe out in the garden in the sunshine?
SueT.
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Hello Sue,
Well I have dealt with this for 10 years now and please know things will get better. As I read your post it took me back a few years indeed. I like you was at my wits end but through wonderful people on this site I magaged to get to a place that I can still lead a somewhat normal life.
Having this kind of body pain I know is horrible. I tried everything inthe book and still felt like I was making no progress.
With this disorder it hit everyone differently and as you are finding out there is no one prescription that works for all.
For me I took all those meds and got to the point I couldn’t hardly function especially with gabapentin. I met with a holistic counselor and she went through all my meds, my issues and we left no stone unturned.
She looked at my diet which she adjusted y removing any fatty foods, had me cut my sugar and salt intake in half for staters. She put me on a schedule of eating healthy foods every few hours. She said eating 3 big meals a day was not good and my body needed nutriention steadily throughout the day.
So I started that and after about 10 days I was feeling a little better. Next she started weaning me off slowly of my meds which took another several weeks. ( My dictor was aware of all this). Then lastly she had me join a gym where I do mild exercises.
Well didn’t take long and I started to feel more like living. I had to retire 10 years ago because of this and just do volunteer reed work now.
I know Everyone has to take their own journey, but for me I think I’m on the right path. I do get flare ups but try not to let them get me down.
Best wishes to you in Your journey !
Never give up girl!
Fearski
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