Hi all, I hope everyone is having a good weekend so far.
As some of you will know I have been in a bad patch for a few months now, I have fibro and spinal issues... I had another MRI last weekend and was told the next available appointment for results was Feb 27th, they called yesterday saying they were bringing the appointment forward to Fri next week.. positive news ish however now I'm worried about results and anxiety is higher than normal at the moment.
I also have been referred for hydrotherapy, but he actually said it won't help pain but will strengthen some muscles.
I have crutches and a wheelchair to use, I'm still getting negative comments from family about the use of these... as I have been coping without for years, so it's new to them.
I'm really struggling to stay positive!! My drug regime has been steady... but the last few days and night's the pain is awful again and sleeping is hard...
I'm kinda hoping they find something on the MRI that they can fix!! Which seems ridiculous really... hoping for a spinal compression!! But whichever way I look at it, it isn't going to be positive news!!
Sorry for long post, just needed some friends support xxx
Much love to you all
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You're not on your own. When you have pain every day it wears you down. I'm having the same issue. I think it's best to seek professional help for your mental health as pain gets worse when you're depressed. Best of luck x
I would suggest to go online and look at Mindfulness. 3 months is a long time. That's what I'm actually doing now. I've been given some handouts teaching you about breathing and living in the now.
Thanks for replying, ironically I actually teach mindfulness lol so I have got the breathing exercises down... which helps bring my anxiety down and avoids panic attacks. I was hoping for the CBT to talk through with someone else my issues... I still talk to myself a lot lol (crazy lady alert) but I would really like a response haha...
Hope you are well and finding all things useful xxx much love to you xxx
I wouldn,t assume anything sinister hun- and as for the hydro in my oipinion its better than sex!! go for it I find it so good.
I'm glad you have got an earlier appointment. It's not to long to wait for your results. Sorry to hear your family are not understanding your need to use aids at the moment. It could be that they just don't want to accept the depth of help you require. Good luck when you go. xx
Thanks, I'm sure that is the case with my family, but I wish they could just understand or feel what I feel just for a moment...
Thanks for your reply xxx much love to you 💜💚❤
That sounds great!! Enjoy xxxx
Hi
I'm so sorry you are struggling. Maybe when you get your results you could show them to your family, hopefully they will be more understanding then. Take care Lynne
My family thought I would always get back to the way I was. But I was just diagnosed with more things. They get it now. They know I'll never be the same. They get it eventually. xx
I really hope so!, this is what keeps happening to me! Every year or hospital appointment I just get diagnosed with something else, non treatable!! Just pain management..
Yeah she bought one last year as her joints are bad too... I used to be able to drive, so i could use it, but not driving at the mo!!
Hi
Could you show your family this forum , then they can see what is like to be in pain 24/7 and they might just realise it's not in your head , that it's real. I'm very lucky to have a great support network and all of you on here. Love and hugs Lynne xxxx
I really feel for you. I wonder how they'd feel in our shoes even just for half a day. We will all support you on here. Could you take a family member to one of your appointments and ask Dr to explain how much pain you are in and how it affects you. Please take care of yourself Lynne
So sorry you feel so bad. Having a really rough spell myself at the moment so can totally relate. Hope our understanding and listening ears help if only in a small way. Try to keep positive if you can. Best wishes. x
Forgot to mention that I understand fully where you are coming from with your family, as mine have a similar point of view. It is very sad. Mine seem to have got worse, as I and OH health has got worse. I can't really understand or believe it to be honest. But there it is. I have said this before, I can only put it down to them having problems in their own lives and the fact that I look reasonably OK and have managed to carry on, up until now. My eldest daughter said to me yesterday - well, when you get to your age what do you expect. She has a point, I am 77. But there you go.Take care. x
Mine had suddenly got a lot worse than before.. I have managed for 10 year but now it has completely taken hold and knocked me down.. I'm only 30 so I think they are all struggling accept it, xx
I'm so sorry to hear you're going through it at the mo, I can relate, as I'm going through lots of pain myself, I too am now using crutches, am waiting on OT referral to get a wheelchair, hopefully! Fortunately, I have great support from family, but did take a couple of yrs to get to that stage, what helped my family was taking one or another, to appointments with me, I got drs/specialists, to speak to them about my pains and struggles, plus having them read through letters from these drs etc. I've only recently been diagnosed with fibro, and have a meeting coming up, about what fibro is all about, impacts etc, which I will be taking my daughter with me, as when I told her about it, her first words were....not something else!...shes a little more understanding now, but wants to come with me, to understand more. So maybe that's a way to get your family involved, and more understanding.
I really hope your appointment goes well hun, and I hope you start getting some ease soon, take care xx
Hopeful that they have brought your appointment forward. It isn't always bad news.
As to your family's negative comments about your crutches and wheelchair, It's none of their business, they are aids for your assistance : would they really like to have to care for you if you fall and seriously injure yourself?
When anyone questions my need for a certain aid; I tell 'em to take a hike! (but less politely!) Your body, your pain, doctors know better than family where pain is concerned.
I've already had to tell one of my friends, who really doesn't know me well, to go forth and multiply! ( he was pontificating about somebody he knows with Fibro; Told him we are all different. Well, Whoop de do!)
Thanks Midori!! That is the attitude I need to adopt!! I did tell one of them where to go this morning actually after reading your comment!! You are 100% right. We are all different and every day is different!!
Thanks for your reply I really appreciate the support xxx
Much love to you and I hope you are having a good weekend xx
Not my post, but I am dead nosy. What does offski to Wales! mean in English Going skiing - if only? moving house; or moving Country. Whatever it is good luck. Sounds like a real adventure!
First, let me say the fact that you are trying to find ways to stay positive despite all the changes we are pushed through shows how strong you are ; you deserve a pat on the back .
Second , our families always find it harder to catch up with the changes that happen to us , sometimes their efforts to hide their worry about us is by humour , they often don't realise how cruel this can feel , eventually as they get used to the new things we need they become more comfortable and caring ..... Or they don't , and then they need a bit of telling off!
Third, I have a number of chronic conditions including Fibro , Ehlers Danlos,,GCA and recently Heart Issues from Dysautonomia and SaNRT. I'm still waiting for definitive decisions on the exact types of EDS and a more useful combination of drugs and therapies to manage my conditions. It's been a long , hard road of over fifteen years to get were I am now , and I'm just getting used to my sticks and braces myself.
We all know keeping our anxiety at a low level is one of the best pain relievers we can have , but unfortunately , one of the things that makes us feel worse is trying to get better and coping with new diagnosis.
Early appointments while making us more concerned are actually a good thing . Getting the news quicker , good or bad means less time having to think about what we will hear , and more time that we can concentrate on dealing with the ' next thing' and using the skills we are building up with these illnesses learning to cope with it. There's always the hope that the thing they find is the final piece in our jigsaw and helping that symptom will also bring more relief long term to the rest.
A final positive , I use Hydrotherapy .
From experience, done the right way , not pushing exercises at first but slowly and gradually building it up , it does actually improve the pain as well as strengthen the muscles.
I have a Chronic Pain Specialist with an interest in Fibro and Autonomic Medicine . He forces people out of the pool before they feel they have done enough because he knows that the goal of all exercise is to improve the body without rebound pain , even for the healthy!
The goal in Hydrotherapy is actually less pain from your everyday activities. If you get more pain afterwards you've done too much and need to scale back the following week. If you keep getting pain , your physio doesn't really understand what they are doing and is pushing things too much , in my therapists words , they need retraining.
But the positive , do what you can cope with in the pool , start small , and don't be scared to say 'No' , or 'I don't want to do that yet ' to your therapist and Hydro can be something that reduces your pain and helps your movement by not just improving your muscles but relaxing the body as a whole.
Take care , I usually post on a different forum , but feel free to look through my previous posts by tapping on my avatar it will get you to my profile page. I mainly write anything from a perspective of a Chronic Illness sufferer not just from the one condition and you might find my New Year " Mantra" and New Year quotes for health quite useful on these more fragile days .
So sorry you are not in a good place at present. I did hydrotherapy and it had great results over time. It wore me out to start with and I had to take it in small steps. When I had completed my NHS course I did it in the local pool. 8 months later I can now do 45 mins of aquafit and can swim 8 lengths. Helps with both the pain and has stamina. I also do physio every day, and a combination of two of the above and gym, pilates, tai chi and yoga every day. I take a low level of gabapentin and no pain killers as I am creating my own. All sounds ambitious but a year ago I could barely do 1 min on 5 pieces of gym equipment. I have built up really slowly and with a trainer at the gym work on various issues eg walking on hills. It all sounds good and I recently managed a trip to a London museum by train although I did have to use a wheelchair for part of the visit as I was running out of go. Never give up! I also took my daughter to my appointments as I was having problems of getting her to understand how I was and that was helpful. Hope your appointment goes well.
Oh I hear you! I’m in the same situation as you. Fibro and spinal issues. And yes I’ve also wished for something on MRI’s so they can actually do something to help me! I do have compressed nerves in my back and neck which has now lead to a huge list of issues but they won’t do anything. More recently cognitive difficulties, memory, fine motor skills vertigo. Yet no one is doing another mri to see if I have cord compression as it was damn close last time. They even scanned my brain as they threw MS at me! Which it’s not and I knew this. I’ve been this way since an accident in 2018, and I’m starting to lose the will here. On two antidepressants as I’ve lost pretty much everything. I did have some spinal issues before but nothing this extreme.
Finally seeing a neurologist in feb, which is who I should have seen over a year ago but the number of screw ups I’ve had by the NHS is insane.
If you want someone to talk to who totally gets it, please feel free to message me 😊x Cath x
Wow, reading this made me very sad. Having a non-supportive family must be incredibly hard. But you have us 😘
For people I meet who just “don’t get it” or don’t believe how much I am suffering, I typically show them this image of what fibro would look like if it could be seen:
Wishing you the best of luck with everything. I just posted on another thread about acupressure mats - if you don’t have one, it could be worth a try for a little relief (depending on your spinal issues) xx
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