I do feel so frustrated! Went to pain clinic for the second time. She asked how many times i go out , i said only when i have health appointments, i'm in so much pain, and so tired that it's all too much.
She then said i ought to get out more, take up exercising ( which i told her i have pain from head to toe) She then said it's impossible to have it all the time seeing that i am no longer working and resting more,then she said it doesn't get worse over time, and if i take up yoga and the exercises she gives me i will feel a lot better! PLEASE god will someone listen!
Does anyone out there have it 24/7 ? i seem to get no respite, it seems it's in one place then next shoots into another part , this has definitely gotten worse over the 20 years.
Or perhaps i'm going mad!!
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I definitely get zero time when I'm NOT in pain, and I'm sure there are 1,000's of us who are the same.
I can get temporary 'relief' from the worst of the pain, but the pain NEVER goes away.
It's just so damn exhausting............to be able to sleep at all, I have to drug myself into a stupor!
I don't do anything I don't HAVE to do. My wonderful husband does ALL cooking/ cleaning/ laundry/ housework/ gardening/ shopping...........everything, because I can barely manage to continue to work (in a seated job, part-time). I can only manage to shower 1-2 times a week, I wash seated at the sink instead. I go to work, go home and go straight to bed. If I've taken my drugs slightly 'early' due to excessive pain, then my husband cannot wake me for supper, so I miss it. I sleep from 630pm to 5am, then do it all again ! I go nowhere else. I do nothing else. Because I can't.
Hi, thank you for your response. Yes i am the same i struggle to lift a plate up i have a plastic plate. I get dry eye every morning depression, cannot raise my arms fully up ( which she said she will work on that ) been like that for years. Pain in hip ,back, neck ,shoulders ,legs, knees ,ankles ,feet,arms ,wrists, you name it i seem to have it. Not even mentioning the fatigue! She just makes me feel like i'm a lazy idol human being. Wonderful for my depression. Can i say no to the exercises she has me do ? Sorry about the rant as you know once you open that can of worms you just can't stop.
Agree with others that you should ask for or find another physio/pain specialist because she clearly doesn't either listen to you or understand Fibro.
If I were you, I'd actually ASK her to tell you what she understands/ knows about Fibfo ?
I'd also be telling her exactly how she makes you feel 'lazy' when you're NOT ! e.g ''Do you think YOU could do this exercise while someone is stabbing you with red hot needles, you haven't slept for 3 days and someone periodically kicks you in the back, every 4 seconds or so ? Because THAT'S how it feels for ME while I'm doing it !''
Pain and Fatigue 100 percent of the time. If i was you, i would ask to be referred to another pain specialist. Clearly this one doesn`t understand Fibro at all.
Yes 100% all the time but it fluctuates in level of pain so sometimes I’m at a 4; others a 7 and some days my body is screaming and I’m in bed! Look these gps, pain experts etc if they haven’t experienced it they don’t know! Yes research says gentle stretching like yoga can help to a degree it’s not a cure, going out can boost your endorphins which help lessen pain (research again). Please don’t take it to heart I think we all feel under listener to and patronised etc. it’s a shared experience that we can all relate to. You have to listen to your body, I gave up work too and I did feel that it was more manageable but if I do too much it’s a day in bed the next day, it’s a vicious cycle. When I did the pain management course I met 8 wonderful ladies who all have different conditions but all with pain and we have our own little support group we wattsapp, meet up once a month (before covid) and it really does help talking to people who know and understand! Never any judgment just kindness and compassion it’s worth the world.
I have a base level of pain and fatigue that never goes away, but is increased by stress, over doing it or sometimes for no reason at all. I can’t work, spend most of my time at home and take daily meds.
However, one thing that does help me is gentle movement. In August of last year after a period of almost complete inactivity following a bad flare my body had seized up. All movement was painful and I was walking like a very old lady. In desperation I reached out to my physio who I hadn’t seen for about 18 months. She was shocked at the sight of me.
After an initial meet up and assessment we started with some very gentle exercises done lying or sitting down. I only did the exercises for a couple of minutes at a time and skipped them if I was having a bad day, but gradually I did feel my body loosening a little and we were able to add more movements. I can now do a Pilates class (one of my old pastimes) on a good day as long as I listen to my body and stop when I need to.
I still have a constant level of pain, still can’t walk far, will never be signing up for couch to 5k but my body does feel easier. My muscles feel stronger and I have less really bad days. I can lift the kettle now to make my own tea which is a definite plus.
Your physio suggesting you take up yoga was a thoughtless throwaway comment that I am sure was meant to encourage you but has clearly had the opposite effect. However, please do try to do some of the exercises that she has given you, or look at YouTube for seated exercises. Just a few minutes at a time, perhaps if there is a time of day that you feel less rubbish. You have nothing to lose and fingers crossed it may help.
Not all day and night in the same place, but yes this is my life. I have arthritus as well as fybro, waiting for a replacement hip so I agree its constant. If I push myself and do a hobby read, craft etc I am not as bad, but often pay for it more the next day. It is not easy for someone who does not have it to understand, but agree health professionals should have more idea.
Hello, unless someone can actually walk in your shoes they really will not understand. It’s okay to be trained to do a job but unless someone can experience full time pain they don’t share the empathy. Yes you can give up a job, rest more, pace yourself but only you know what it’s like. I personally have never been to a pain clinic, I find I’m much better taking it day to day and home can be our comfy zone. Totally get your frustration , think we all here understand xx
I use to be a nurse many years ago and we were taught the patients pain is what they say it is. I always believed a patients level of pain. There were some professionals that didnt and I was horrified by there attitude. This was in the 1980's. Since then there has been so much more research on pain. Now that I have Fibromyigia prior having chronic pain and severe endometriosis. The pain I am feeling at the moment is constant but I am recovering from a nasty tummy bug. I have never had any luck with physios, my best treatment has been with Cranio Oestopathy. Though pricey I feel it is totally worth it and seems to realign my body as the practictioner specifically works with nerve pathways and is very gentle.
My daughter has suffered with endometriosis for a few years now, that in its self is horrid so you have my empathy, hope you start to feel better from the tummy bug.
Yes I have pain all the time , as I got older it has got worse but I do find that stretching my legs and arms does help to remove the spasm. I use heat to rest my muscles and often have a heat lamp on my legs to help the pain. Vitamin D and magnesium will also help. Look at your diet to see if your eating something which is making you worse.
Look on line for the latest updates about fibromyalgia finding because much has changed. I brought myself a sit down exercise bike best thing I ever done. I couldn't exercise before but can with this bike. I enjoy doing it even in pain as the pain levels do drop as you go. I now up to 10 minutes away. Keep your chin up and keep going don't despair.
If you’re going mad - so am I! It is a very difficult illness to explain to anyone who doesn’t have it. People try to be helpful with suggestions but I think you have to work out for yourself what helps and what makes you worse. I try not to tell people about it as they always make me feel as though I am a hypochondriac. I have arthritis in my knees and in my spine so I tend to tell people that is what is causing my pain as they find that easier to accept. Think I am luckier than most of you as I am retired so not trying to work but I do have a busy life and think getting out and meeting friends and family does take my mind off the pain. Haven’t found any medication that helps so far but I live in hope of someone finding an effective treatment.
I have pain 24/7 and have done for the last 28 years.
I have my base level pain - which is always there and is what I would class as moderate pain. This is the pain that medication helps to manage to a level that I can function at
There is also the other pains that fluctuate and move around the body, and this is the pain where I draw upon all my other pain management skills to manage
But I cannot remember what it feels like to be completely pain free
Hi you aren't going mad the pain is there all the time with me and it's very real,each day there is something different again on top of the everyday pain You cannot.explain to anyone how severe the pain is and your everyday struggles unless they have suffered similar, I was told at the pain clinic there' s no such thing as "CAN'T" well there is, you have to do things at your own pace the best way you know how it isn't going to be easy but try and do little steps each day, it's not going to go way but it can some days get a little easier take care of yourself X
If you're still around for it I'd like to expand on Braveheart1 's and Jaycee18 's take on it: Some of the things some docs and physios say are worded off the cuff, and we may also be listening too harshly, so it's important to find grains of salt without falling into desperation and dependency on what they say, to take them as our servants, not our masters. Some stop working for us if we don't do exactly as they say, but most still try and I can see yours still trying, esp. if she sees you're trying.
"Get out more and do exercising"?: Well, how about trying with 1 minute per day and increasing from there as long as it doesn't increase the pain? Baby steps does it. I tried an hour long neck/back class and it tore me apart, made me cry several times. Then I decided to do it my way: I just laid down in between, got up and walked around. Did about a third of what the others were doing (20 years older than me). And the physios accepted that: What's best for you, they said. To help me feel better about it, I went to them and explained, but that's actually not necessary.
Maybe it's possible to re-interpret "it's impossible to have it all the time" as it's "incredible", and weaken it inside and when talking to somehow who says this next time: Like, "yes, I wouldn't have thought that either, before". Or "But if that's how I feel, how can we now work on it best?"
"it doesn't get worse over time" is true and wrong: In fibro's build-up, in flares (and these may be very long), with other added conditions and with age it does get worse over time. But it's not a progressive condition like many others are.
"if i take up yoga and the exercises she gives me i will feel a lot better!" - well start with baby steps and prove her right or wrong. These are words of encouragement, it does seem she's trying to help you... If you prove her wrong, you could still get her to listen, empathize and try new things with you.
The good thing is when people say things like this, they usually don't repeat it. And the next time we see them, we can correct them, if necessary, or at least talk about how they meant it. One of my docs said fibro is a rubbish bin diagnosis if docs don't know what it is they call it that. I let it get to me, but still went there. And he checked for a few other things and we got on very well, he helped me a lot with thinking about how my symptoms and treatments are connected etc. ... So it's good not to throw the baby out with the bath water.
Oh, and for what it's worth: I've had pain 24/7 most of my life, even pre-fibro. But by starting exercises in very short stints (sometimes only seconds) and gentler, I manage to do anything and increase that.
You are not alone & mine has definitely been progressive. Up until getting Covid a couple of days ago I’ve had pain throughout my body day & night. I even get the pain in my teeth & it isn’t dental problems. I can’t tolerate a duvet on my body & have a very soft throw as it is all I can tolerate. I thought I was going mad until I found out the pain clinic had heard all this before. There is new guidance for NHS & fibromyalgia admissions so gradually they are educating professionals
You’re not going mad and your GP is an idiot. I can’t believe she said it’s impossible to feel it all the time, as you’re resting!!! Clearly no understanding of the condition. 😠
I have constant pain. It’s worst in my pelvic region, but I have it just basically from the neck down… and up if I have a migraine.
I’m recently diagnosed and the consultant told me to exercise and push through the pain. I tried and ended up with a 3-day migraine and migraines every time I push myself too far. I have since read up and found that pushing through fibro pain is the worst advice ever 😅
I’m sure you’ve tried everything going, but I sure found this article helpful:
Oh how right you are! I have found the so called local Pain Clinic quite useless. When I asked why I was put in Amitriptalene(?) after the first of my 2 visits I was told it was because it was the cheapest in their repertoire. When I had adverse reaction I was offer the next least expensive one. Other than that I was treated to a diatribe of platitudes and sympathy - they just do not understand the grinding continuous pain of Fibromyalgia. I was given an Open Appointment but it is not worth the stress of getting there.
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