Tag: pain

Chronic Pain Update At 28 Years Old

Physical and Mental Health / 5 years ago / RelentlesslyPurple

I’m writing a Chronic pain update at 28 years old since I wrote about Chronic pain at 25. Cleaning up the blog, I came across this post and decided to read it. I have noticed it is a well read post even after 3 years so I figured an update was a good idea.

Chronic Pain Update at 28 years old

Picking Up 

Having had the blog 3 years to vent and moan has been extremely therapeutic and uplifting for me. There has been low points but having the blog, twitter and new people to chat to on bad days has really helped. Having something to focus on has also been a huge help, I enjoy blogging so much!

Keeping Track

At 25 I mentioned that I wanted to document my journey with my physical and mental health. I have done just that and I know it’s helped myself and others. That’s something I’m pretty proud of. When you constantly feel pain you often experience something called brain fog. You can easily forget things, for quite some time over the last year I felt like a fraud. I forgot all about my diagnosis’ and began to think it was all in my head.

Reminders

Seeing old posts being read often makes me re-read them myself. About 6 months ago I relearned that I have peripheral neuropathy. I’d been so stressed I forgot, knowing made so much sense all over again. It seems so ridiculous to forget something like that but I was focusing more on my mental health, discovering I have PTSD as well as Anxiety and Depression. Reading these posts have reminded me I am ill and at home for a reason and I’ve been much kinder to myself. 

Chronic Pain Update

So where are we up to now? Not much has changed to be honest, I collect my repeat prescriptions and only see a GP when necessary. I know we’ve exhausted all options right now. Without being asleep 24/7 I am on all the medication possible to help me. I have severely bad days, worse than ever with even more issues but I am learning to cope better. Today is quite a bad day, I’ve felt extremely hot and sick with pain but I’m taking breaks when I need to. It’s important to not to over do things as you always feel so much worse.

Feeling A Lot More Positive

Whilst things have been getting worse I feel a lot more positive these days. 
With a support network online, the Mr happy to do anything I can’t and me being kinder to myself things are more manageable. I’ve learnt to accept this is the way I am, I just need to pace myself and not push myself too much. I’ve learnt to say no when I don’t feel up to something. I guess I’ve grown a lot over 3 years!

Continuing Gabapentin

Physical and Mental Health / 7 years ago / RelentlesslyPurple

Some of you have been following my posts about my Gabapentin trial. I was given enough tablets to cover 6 weeks building up from 1 300mg tablet a day to 6 a day (2 tablets 3 times a day). 

I’ve now finished my trial and had to book a Dr’s appointment to discuss how it had gone and wether or not I should continue. So I thought about the benefits I’ve had since starting them and thought I’d share them with you.

  1. It takes the edge off the pain, it hasn’t stopped it but it gives me enough relief that I can ignore the pain better and do a little more.
  2. Sleep! I do have the odd rough night still and wake a few times but it’s not as often as before so I’m less tired during the day too.
  3. I can get out of bed in under 5 minutes now instead of 20 minutes with a LOT of moaning and I get to drink my morning tea whilst it’s hot haha!
  4. A short walk to down doesn’t leave me crying. (Although I tend to over do it at times which I am still trying to work on..) So I’ve been getting out more.
  5. I’m less snappy! Pain makes me quite angry and emotional/upset and it makes everything seem 100x worse & I stress constantly! You could literally ask me where something is and I’ll have a full blown meltdown but it’s happening a lot less now!
  6. My appetite has come back. I know the tablets are known to cause weight gain but so far so good and I’m eating two meals a day and actually enjoying it plus a few snacks in the evening!
  7. I don’t feel like screaming constantly. The pain still gets to me but not to the point I want to scream and cry like a toddler.

So far I’ve not had many side effects apart from falling asleep early on the sofa when I’ve had a busy day which I’m willing to deal with if it means I can do things in the first place. I’ve been able to a few things I’ve not been able to like joining the Mr or going into town which is only a 10 minute walk away.

I still struggle to carry things so I am going to get a shopping trolley so I don’t always have to take Izzy with me to get more than a few light bits.

After spending so long determined not to be on medication daily having to stick to timings etc and working out I’d be on over 400 tablets every 28 days was a bit of a struggle to accept but being able to do a little more has made me realise following a schedule isn’t so bad!

My anxiety about going out has eased a little now I know I can go into town and make it home without getting so stressed and upset from the pain.

So far I am happy with the results and decided to continue taking Gabapentin especially after spending a day and half off of them and hurting so much all over. I’m definitely benefiting from them which is something nothing else I have tried has managed to do.

Gabapentin - Shake your meds
Have you continued Gabapentin after a trial? Did it help?

Week 3 of my 6 Week Gabapentin Trial

Physical and Mental Health / 8 years ago / RelentlesslyPurple

At my last pain management appointment I was asked to start a gabapentin trial over 6 weeks starting with 1 x 300mg a day & increasing by one 300mg tablet every Tuesday starting with 10pm then 10pm & 8am and now I am taking them at 2pm as well.

I know some of you are interested in how it’s going so I thought I’d keep you all updated.

Feeling good

So far I have felt some relief & I am now up to 3 tablets a day (900mg). It’s been a huge relief in the morning taking my 10pm tablet and I can get out of bed a little easier. In fact most morning’s I feel brilliant! Although the first few days I did feel a little spacey!

My mood has definitely improved & I don’t feel quite so depressed & anxious constantly. It’s been quite nice throughout the Gabapentin trial so far.

And a ton of other aches and pains 😂😂

Wearing off

By the evenings though it doesn’t seem to give me much relief compared to the morning. The 2pm tablet I started this Tuesday doesn’t seem to have made much difference but then I have also been quite busy this week & may have overdone it.. A little bit.. Or a lot.. 😂 So I have been very moody & snappy the last 2 days!

Lack of sleep obviously hasn’t helped much either this week and was up at very early hours yesterday! I’m still feeling pretty rough but not quite as miserable and snappy.

I’m looking at doing things like buying a shopping trolley on wheels (in purple of course!). That way I can go shopping alone without struggling so much and hurting myself more.

I guess I am slowly accepting this is only ever going to get worse and I need to start finding ways to do what I want to & have some freedom without trying to struggle with doing things the usual way. 

If your a spoonie what things make your life with chronic pain a little easier?

Pain Management – Trying Something New

Physical and Mental Health / 8 years ago / RelentlesslyPurple

Pain Management

I had pain management today and was quite anxious about going. It didn’t help that I had to go to the Dr’s first where I didn’t get seen until half an hour after my appointment time but the main reason was that I needed to bring up the fact that whilst my First steroid injections for a little while things had gone down hill since.

After explaining I’ve been getting electric shock type pains all over, the burning and tingling I’ve had, how everywhere seems to constantly ache especially when I’m cold, my memory has gotten worse and I’m struggling to keep my balance amongst other things The Dr decided the injections weren’t going to be helpful as I had 3 injections at once not just one so it should have helped for a lot longer and instead, I was offered a trial of Gabapentin.

Gabapentin trial

I had to think about it quickly.. I don’t want to rely on yet more tablets but I’m struggling so much to cope with the pain. Everyone must be as bored as I am with all my complaining. With the cold weather setting in I’m honestly scared to think I could feel the same as last winter. I decided to give it a go.

Pain management - Gabapentin

I’ve not really read much about Gabapentin up until now and I still don’t know a lot about it but it sound’s like it’s worth a go so tonight I’ll be taking my first dose of 300mg and gradually up the dose over the next 6 weeks & hopefully it will help.

Have you tried Gabapentin for Chronic pain? Did you find it helped much? What dosage are you on or are you trialling it yourself? I’d love to hear from others too and find out how they get on!

An Exhausting Week

Family / 8 years ago / RelentlesslyPurple

It’s really been an exhausting week as I was due my ESA assessment on Tuesday afternoon and had spent the past week or so beforehand feeling gutted that I was going to miss out on the little time we had to spend with Eva on her birthday around schopl but on Monday I got a call asking me to move my appointment time from 2.45pm to 10am. Part of me was so glad it meant I could surprise Eva and collect her from school, hand out sweets to her classmates & take her to spend her birthday money in town but the change of times also threw me and made me panic so I spent most of Monday night waking and was up by 5.30am panicking and feeling sick & nervous.

On the plus side I had plenty of time to get Eva’s cards, badge & balloon ready before she woke up & was the first one to wish her a happy birthday!

an exhausting week & Eva's birthday

I managed to keep calm until the Mr took Eva to school & then I begun panicking more about the assessment and started feeling really sick.

I hate talking to strangers but the woman that did my assessment wasn’t too hard to talk to at least but every pause made me even more nervous and several times I felt so hot and dizzy I thought I might pass out. I had a friend in with me but I spent most of the time staring out the window.

I dont really remember exactly what was said now as I was mainly trying to focus on breathing and answering each question without stumbling over my words but I remember going through my daily routine which was quite depressing to hear out loud.

We moved on to my depression and anxiety when my previous self harming came up which I stupidly didn’t expect and it threw me especially as I had to explain it fully aswell as my failed overdose at 18. By this point I suddenly realised I was running my thumb nail across my left palm hard enough to leave my hand bright red underneath the desk.

I dont remember much that was said again after that but I remember doing the physical tests before being told to expect to hear something within 2 weeks and leaving. I couldn’t wait to get out and panicked as I felt so hot & sick after doing the physical and was shaking by the time I got out into the fresh air.

I thought I’d feel relieved afterwards but instead I felt even worse. Talking about my past, how much I’m struggling mentally and physically every day, explaining my boring depressive life messed with my head a bit. Its been a few days now & I feel a little better at least but I am still worried about the outcome and what could happen next.

My anxiety in general has been through the roof lately and I’ve been struggling to focus on anything for the past few weeks where we have had so much go on and I just can not shut my head up long enough to do anything so I’m hoping now things are calming down again and we have less appointments to deal with for a few weeks I can get back on track and relax a bit more.

Starting next wednesday we have workers in and out doing our kitchen, toilet & bathroom which is making me panic a bit but I am hoping that as I’m pretty much stuck indoors with little to do whilst they do the work I will have a bit of extra time to focus on the blog & crochet and hopefully stress a little less!

ESA Assessment

Physical and Mental Health / 8 years ago / RelentlesslyPurple
ESA assessment

On the 22nd I have my ESA assessment and I have to say it’s really making me nervous. It’s so hard trying to explain to people how much I struggle on a daily basis with both my pain and mental health and I’m terrified as if I’m refused I just don’t know how we are going to cope. I tried to write on a ‘support’ group how I am feeling and was surprised to find so many people making horrible comments towards me, I know there are people a lot worse off than myself and I can appreciate it is so much harder for them but to me this is difficult too and I need to ramble about it somewhere safely… I guess this is kinda what the blog is for after all!

I didn’t expect to get as far as actually going through with the assessment, I guess part of me hoped the steroid injections would have helped ease enough pain for me to start getting back on track and start looking for a part time job but after a good week everything has just gone back downhill and I’m back to where I was before the injections so I have no choice but to go through with the assessment and hope for the best but my anxiety is getting the better of me and feels like it’s eating me up.

How do you even begin to explain to a total stranger that although you look fine on the outside apart from walking a little funny that every step requires so much effort that even a 5 minute walk leaves you exhausted physically and mentally at the age of 25?

I know being completely honest is necessary but it’s also scary to think I’m going to have to admit to a stranger that I can’t pick up my baby at just 20 month’s old, if I take her out on my own I have to get the Mr to put her in her stroller as I can’t even do that without causing more pain, I cant even lift her onto a changing table so have to lay her stroller flat if I’m alone! How do you admit that you can’t even manage walking your 5 year old the 10-15 minute walk to school and back every day and have to rely on the Mr to do it otherwise I’m left in so much pain and feel so drained that I’m left completely useless for the rest of the day?

I guess a big part of it is me feeling like I am admitting I am a failure as a mother, I cant lift and rock my baby when she needs it, I cant walk my daughter to and from school and get chatting with the other mums, I cant take the girls to the park regularly, I cant bend down and pick up their toys properly, hell I cant even wash their damn clothes because the bending, lifting, and stretching to hang the clothes sends my back into spasm!

How do you admit all this to a stranger face to face? How do you explain that your basically useless and break down several times a day just trying to do the most basic of things? How do you explain that simple tasks make you feel so queasy because of the pain & a sharp bolt can make you vomit & leave you feeling so shaky and weak without sounding like a drama queen?

I’m also terrified my emotions will get the better of me on the day, I’m an emotional wreck most day’s as it is and if I get too worked up I get queasy and struggle to breath without throwing up! Any time I try to explain to someone what I’m going through it makes me feel like crap reeling off a list of basic tasks I struggle to do, how every time I struggle I become so upset and angry with myself for not being able to do such a ‘simple’ task etc. It all just sounds like I’m over reacting!

I guess I’ve tried to hide the pain and how it leaves me feeling from people for so long that now I need to open up and be honest so I can get the help I need it’s much harder and it feels like I’m about to go to confession to admit all my failures instead of sins.

It’s terrifying to think they could decide to deem me fit to work when I can’t even load the dishwasher daily, climb into the bath, push a hoover around and all the other thing’s most people do without thinking. The worst part is if they do say I am fit to work I have no choice but to try and find a job as there’s no way I could cope trying to keep on top of school runs, looking after Izzy etc so I need the Mr to be at home to carry on doing it all as I can’t.

Then there’s the added fear of how my health will affect a job as just 5 weeks doing 4 hours a day work experience at the job centre was draining and one of the day’s I had to be sent home as I was in so much pain & everything felt too much and I arrived in tears! I tried so hard for the first week or two to hide it but eventually the staff I worked closely with were picking up on it and I was made to go sit at a desk several times. One of those times I was struggling so much I buried my head in my arms on the desk to hide the tears whilst I tried to stretch my back out that one of the managers walked past and thought I was being lazy and told me to sit up which of course led to me feeling even worse and having to excuse myself to go hide in the toilet for 5 minutes to calm down.

I’d love to work, I’d love the chance to socialise with other’s and actually make some friends around here and do something to be proud of and show the girls the importance of working but I know realistically I just wouldn’t cope,I cant even keep on top of the blog on bad days because I just can’t even focus! It’s fairly easy to get this all down in words but how on earth am I meant to explain all this to a complete stranger and have them take me seriously? So many questions and I know on the day I’ll only feel worse and again afterwards waiting on their decision. I guess time will tell but I needed to get it all off my chest instead of letting it carry on eating me up!

Half term & chronic pain

Physical and Mental Health / 8 years ago / RelentlesslyPurple

As a parent you look forward to the idea of half term even if its just a little bit, no early hectic school runs to do, no uniform to sort, more time with the kids.. But then we also kinda dread it a little knowing we have to make sure we keep the kids occupied as much as possible to prevent the dreaded repitition of ‘I’m bored!’ aswell as having twice as much housework to keep on top of!

For me although it is a welcome break from the routine and I love the girls having more time to play together half term has also become one of those times that I feel a little sad. Being in pain so much of the time often leaves me feeling so exhausted I end up feeling guilty for doing so little with the girls in the holidays.

We are half way through this half term and so far unfortunately I have only managed to take the girls to the park twice. I wish we had done more over the past week but I haven’t been feeling great so it has been a struggle to get us out and about as even the short walk to and from the local park wears me out most days.

We have been lucky to review weekend boxes which at times has been a godsend being able to occupy Eva during Izzy’s nap times & we have been doing a few crafts ourselves but I feel guilty that they aren’t out socialising and playing with other children more, especially Izzy as she is now at a stage where she loves playing with other children.

I need to find a way to fit everything in and still manage not to push myself too hard but I get so stressed with myself falling behind as it feels like I’m constantly behind on everything and the girls suffer by being stuck indoors bored doing the same things over and over simply because I’m either busy pushing myself to catch up or suffering from pushing myself.

I am lucky as I now having a working dishwasher so have to stand at the sink less, the Mr does the clothes washing, hoovering, cleaning & feeding the animals, the majority of the cooking and shopping etc but somehow I still struggle!?

I try to make it up to the girls by reading and talking to them, taking pictures and doing what I can from the sofa on bad days but I still feel like I’m letting them down. If anyone has any tips or suggestions I’d really appreciate it as over the last few days especially its been getting me down!

Parent’s with chronic pain.. How do you do it? Honestly? I need to change the way I’m doing things but have no idea what to do or where to start!

Steroid Injection Recovery

Physical and Mental Health / 8 years ago / RelentlesslyPurple

On 8th march I had my steroid injections as some of you may know and I posted about the procedure and the first 24 hours and thought perhaps it would be helpful for other’s if I share the following few day’s too.

By the second evening I really felt exhausted after doing very little all day and the injection area was extremely sensitive and sore making it a struggle to get comfortable at all but surprisingly I woke up the following morning feeling slightly less discomfort and managed a short trip around town. I did really feel it having walked for a while and a cheeky stop at the pub probably didn’t help as the chair’s weren’t the comfiest and on top of that Izzy decided to jump and pull me to the floor and Eva managed to knock into me so hard I was almost in tears so again on the third evening I was really uncomfortable and tired. (Moral of the story actually rest for the 2-3 days following and avoid children 😉 haha) I did have a slightly earlier night in the hope I would feel better the following day.

Luckily by Friday morning I really did feel so much better and although I wasn’t completely pain-free the majority of the pain was the injection area again. My burning knees and tingly legs seemed to have stopped for a while. Unfortunately I just can’t stop myself trying to do thing’s I feel I’m supposed to do instead of resting otherwise I think I may have recovered a bit quicker but by Saturday morning I sat straight up in bed without even thinking and got up and dressed before I realised I wasn’t struggling to do so!

I can’t even begin to explain how amazing it felt to suddenly realise I was almost completely pain-free! I still felt a few twinges across the day but nowhere near as bad as usual. The Mr suggested taking the girls to the pub for lunch as the weather was warmer and nice enough for them to play in the garden. Normally I dread it knowing after 15 minutes sat in the pub my back, hips and knees will feel like they are on fire and I wont be able to concentrate or enjoy myself but for a change I felt up for it and we spent an hour or 2 there having some lunch chatting with a few people whilst the girls watched a bit of the rugby before coming home for dinner.

Usually I get back and feel exhausted and just want to die on the sofa but instead I came back feeling just slightly achy but over the moon as we had managed a lovely lunch out where I didn’t spend the whole time trying to ignore my pain and getting stressed. We even received a compliment as we were leaving from the staff as we always tidy up after ourselves and the girls behave well too. Apparently they really notice the difference when we visit, we have visited several times over the last week or 2 with friends to try and stop feeling stuck in the flat and I was worried about taking the girls in there and annoying customers & staff so to be given such a compliment really cheered me up on top of the pain relief!

I expected to wake up Sunday morning and regret going out Saturday yet instead I felt amazing and managed to walk to town as well as tidying when I got back. It was so strange being able to do things without thinking again, I’d do something silly then get overly excited because I managed it so easily!

Again Monday morning I woke up feeling great and had the dishwasher loaded and on by the time the Mr & Eva had left for the school run at 8.20am! I put some music on to motivate me even more and managed to scrub half the kitchen before the Mr was back from the school run. I’m so pleased the injections have done something for me. Bolts of pain that were bringing me to tears feel like little tiny shocks now and are so much easier to ignore. My walk doesnt look as awful and im slightly faster than a snail again. Even if it only lasts a few more days I’d happily go through it all again just for the relief I have had already!

Have you had steroid injections? How did they work for you? If at all? How long did the effects last?

 

First steroid injections

Physical and Mental Health / 8 years ago / RelentlesslyPurple

I finally had my first steroid injections yesterday at Orsett Hospital after what felt like an extremely long wait. In the end my consultant decided to give me a Lumbar epidural steroid injection, Left L5, S1 Dorsal root ganglia and Right S1, S2,  S3 lateral branch diagnostic blocks.

image

I was so nervous but somehow managed to keep fairly calm on the surface. I arrived at 9am where I was shown to a bed and given a gown and the most stunning see through granny knickers going (haha!) to change into. I had my blood pressure taken once the nurse finally found a small enough arm wrap for me  & she checked my temperature before I signed some forms and was given my hospital bands and told someone would come and see me soon. I sat and skimmed the book I took along with me whilst trying to stop myself thinking of anything and working myself up. Then the lady next to me was called in after a while and I was told I would be next and someone would collect me in about 20 minutes.

I felt ridiculously nervous and mentioned on the way to the operating theatre that I had a bit of a needle phobia and was trying my best to ignore it. I had to be propped up with 2 pillows under my stomach as I am slim. They cracked a few jokes about but by then I had already began to panic and was trying to focus on not jumping off the table but my consultant Dr. Thompson noticed my heart rate and asked for me to be sedated and  I felt calm almost instantly and although I kind of felt something was happening it didn’t hurt and I wasn’t really aware of what was happening. I remember rolling onto my bed to be taken to recovery and slowly coming round fully a little while later.

Apart from a few tingles I felt very little to begin with, in fact I was amazed I had no pain! After I had been back on the ward a little while I was given tea and toast before attempting to stand. Surprisingly I felt fine standing and walking just a little stiff so the nurse let me change and called our friend Steve to come and collect me.

I felt a little stiff walking to the car and struggled to get comfy but didn’t feel too bad until I was almost home. Luckily Steve stopped and popped into a shop just in time for me to throw up. We managed to get home before I was sick again and I had a rest on the sofa. I tried to make sure I got up regularly and moved about to ease the stiffness although the pain gradually crept back over the afternoon.

first steroid injections

Over the next few hours my hips, back and legs felt like they were stiffening more and more and bolts of pain were taking my breath away and making me feel nauseous. By the evening I was in so much pain I felt so sick with each bolt of pain and struggled to eat. I spent most of the day on the sofa cuddled up with my pillow and wheat bag feeling exhausted and sorry for myself.

Before bed the Mr ran me a nice warm bath so I could de-tango myself and try to ease the pain a little in the hope I could get some sleep. I dosed myself up and although I did wake several times I had a fairly OK night but woke up very stiff again. Unfortunately I was sick a few more times when I got up due to bolts of pain and felt exhausted still but I tried to move around gently across the morning having a few rest periods on the sofa.

I decided to look Dr Thomson up on-line to see if there had been any feedback from his other patients and was surprised and pleased to find out just how successful he is in his field. When  I came across this page I really was impressed reading about Dr Thomson’s work and the 5th paragraph reminded me how it amazed me when he actually listened to me at my first pain management appointment and I had a feeling he really knew what he was talking about.

image
http://www.basildonandthurrock.nhs.uk/media-centre/747-pain-consultant-highlights-international-work

 

Having read this I am so glad I am under such a great team and although I am struggling with the pain I am confident that whether the injections work or not I am under a great consultant who will continue to help me. From the very few people who were able to share their experiences with me it seems I have been very lucky so far and hopefully the pain will ease up soon and the injections work even if its just a few day’s of relief! I will be sent another appointment in the next 13-18 weeks so I guess for now its just a case of resting and seeing how things go. I think I’m going to set up the Catch My Pain app to remind me to track my pain levels again now I have the G4 back so I can monitor everything until my next appointment.

Second Pain Management Appointment

Physical and Mental Health / 8 years ago / RelentlesslyPurple

I had my second Pain Managment appointment today and it went pretty well. I filled him in on how my back has been lately explaining how im struggling to manage because the pain seems to be getting worse and I’m struggling to sleep because the left side of my ribcage feels like its being crushed inwards however I lay. He again confirmed I suffer chronic pain which is hard to treat but we can try and find ways to manage it.

I have to request an X-ray on my ribcage from my GP at my next appointment so he can see what is going on with it as you can visibly see the ribs poking out slightly too. I also let him know I have had my duloxetine upped from 20mg to 60mg because I’ve been feeling so depressed.

He examined my back when we had finished covering everything and got me a Tens machine to use and showed me where to place it and how to use it. He told me didn’t want to refer me to physio yet until we see how things go after the steroid injections and using the Tens machine regulalrly.

second pain management

I now have to monitor my weight and weigh myself at the same time every week making sure it doesnt carry on dropping.. Not something I’m looking forward to as I try not to weigh myself too much due to past problems but I am getting so fed up of being in pain that I’m happy to gain some weight. I just really need to try and remember to eat more and make sure theres a few more snacks around as otherwise I forget and usually just eat dinner each day. Luckily the CatchMyPain app lets me add details and notes for each day so I’m going to make sure I keep track of everything on there so I can show the Dr next time as I totally forget half of what I need to say when I go in there!

I wore the Tens whilst shopping after my appointment and it did seem a little easier although my balance is still awful and I feel silly walking. Hopefully the Tens helps me do more as I’m getting so fed up of not doing simple tasks or doing them then regretting it.

I’ll be having my Steroid injections in just a few weeks and then wont see pain management until June 14th. I really hope by then I’ll be able to start physio again.. That is if I dont keep getting caught up in the wires of the tens haha!

Have you used a Tens before? Did it help?