Can't honestly cope with the brokenne... - Foggy's "Invisibl...

Foggy's "Invisible Illness" Support

5,636 membersβ€’633 posts

Can't honestly cope with the brokenness of me, completely and utterly at the end of my rope

Brandy4 profile image
Brandy4
β€’14 Replies

Hi everyone, I have just joined this community.

I have had M.E for 10 years now, and along with that comes the depression of having this debilitating illness steal my life, but these last three weeks have been just unbearable.

I am so used to living with pain, and have also been suffering with PTSD and severe panic attacks for the last year on top of everything else.

But the last few weeks I have been waking up crying in pain with the most excruciating sciatic pain down my left buttock and pins and needles down to my toes, I've had chronic sciatic pain for about 2 years now, but this is the first time it's been acute and the pain is indescribable. I can't sleep, stand, lie, walk, stretch, rest or use heat/cold absolutely nothing is working.

I've finally also been speaking with a mental health nurse ( I have to wait nearly two years for an appointment with a psychologist!) who has changed my antidepressants last Friday and reduced my Amyltriptaline, Zopiclone and added in Trazodone (after trying numerous antidepressants for the last four years due to on going, unbelievable, and constant trauma and not one of them worked). Phoned the doctor this morning and he is going to prescribe anti-sickness tablets and Gabapentin - does anyone else know if this might help?

On Thursday I managed to pick up one of the worst tummy bugs I've had in decades, so have been being constantly sick and the other, so have not been able to take any pain meds (on co-codamol 30/500, been on them for about 5 years with virtually no pain relief from my M.E symptoms). Plus the change in three of my meds, and the withdrawal of codeine, caffeine (coz I can't even drink a cup of tea due to the burning in my tummy) and nicotine (I don't smoke a lot, maybe 7 a day, but I'm lucky if I've had two since last Thursday) I am in agony from my head to my toes and it's probably a combination of all of the above that's making me so emotionally unstable and exhausted.

My mental health is already so very broken, and my body is broken enough without this excruciating sciatic pain, and being so very sick with sciatica is not in the least bit fun, I'm in bits.

Feel so bad for my wonderful husband who has to go to work every day to pay for everything as I can't work due to M.E, and I feel just as bad for my poor furrbabies who know I'm devastated and are doing their best, but I haven't been able to walk my poor sweet dog in weeks now or play or pick up my two beautiful cats, my mum is worried sick about me and I feel everytime I have a chat with her I just make her worry more and that then impacts on her own health.

I feel like I'm failing everyone and I can't see how they wouldn't be better if I just wasn't here.

Written by
Brandy4 profile image
Brandy4
To view profiles and participate in discussions please or .
Read more about...
14 Replies
β€’
Cb1963 profile image
Cb1963

Hello Brandy4, I used to be on gabapentin for nerve damage many years ago but I ended up swapping it for pregabalin,its so difficult trying to say wether it will work for you as my problems are long term and I just take these tablets as there is nothing else available to stop the pain, I think they are both similar, I hope that you get some relief, I read your previous post, and I felt life has been unkind to put it mildly, I understand many of the things that you have gone through, and I ended up with PTSD, and yes it can fester for years, it can cause many problems, and my life has been a rollercoaster, I'm slightly disappointed that not many people have replied to your post,sometimes people might not want to get involved with conversations maybe because of the word PTSD, I don't know, as it could be a subject that people feel that is quite complex, and it can open up really personal circumstances, mine included,its hard to explain, because we can't show emotions, or we don't know each other, and of course its very personal, coming on here you can discuss most things, and trying to help people is of course the biggest thing that i will always try to do,nobody knows what will happen in life, and I'm sure your husband never misses moment of your time, and your pets will still love you! Sometimes our brains can run riot, and you'll bound to feel a burden when you are in pain,we all get our down days as so to speak, see how you get on with your new tablets and hopefully the pains may ease off,there are other pages on the forum that might be worth looking at, and sometimes they can be quite lighthearted,well That's me for now, thanks.

Brandy4 profile image
Brandy4β€’ in reply toCb1963

Hi cb1963,

Thank you so much for your lovely words and supportive, helpful and kind post earlier this week, I have just written a follow up post on this, so hopefully you will see this too, still navigating myself on this website/community, but I will write to you properly, next week to talk about the things you said in more detail, if that would be OK with you?

I hope you are doing ok and you have a wonderful weekend! πŸ₯°πŸ₯° Take care of yourself xx

Cb1963 profile image
Cb1963β€’ in reply toBrandy4

Yes that's fine,it can take many days/ weeks trying to navigate around the forum, and of course if you're not feeling upto writing a long winded message I understand, we all have lives to try and get on with, you'll find many people are nocturnal lol,and with various aches and pains they find it difficult to get some quality sleep, and sometimes we can have periods where we 'disappear' for our own unknown reasons, strange bunch eh,but definitely try our hardest to cheer people up,it can get frustrating sometimes,but hey,nothing is ever easy,it all depends on what you want to discuss I suppose, and occasionally you'll find others will join in on a conversation, so you'll see people names underneath the user's name, but you'll soon get the jest of it,it can open up many lines of conversations,a few months ago it ran riot on a different page,I was up until 2am!! And there was that many people involved, and it was just general chit,chat, and it had the forum talking for days on end!!! So sometimes it's not always major health problems, but it can be light hearted stuff, so don't be afraid to have a look around within the forum, take card for now,and I'll catch up with you soon, thanks πŸ€—

chriscameron48 profile image
chriscameron48

Hi Brandy, so very sorry to hear about your pain & feelings of brokenness. You desperately need support & having been where you are I would recommend writing it all down & sending it to your doctor ahead of your next appointment. I had M.E. for 20 years, which evolved into Arthritis & Peripheral Neuropathy & it wasn't until I wrote it all down & sent it to my doctor that I felt she really started to pay attention. Take your time & miss nothing out, including your sense of brokenness & desperation. By the way, a bad tummy bug can feel like the last straw on top of everything else & I truly do appreciate the despair you're feeling. The Gabapentin may help, but, if it doesn't, ask if it would be possible to try Pregabalin instead. I get the impression your meds are a bit "all over the place" & I think you could do with some help there. Have you tried the Pain Clinic yet? I don't know if I was just lucky, but I found them to be excellent, with a resident pharmacist who really helped sort out my meds. For more support, I would also recommend joining a FB group called Hands of Friendship, where you can find so many others who are dealing with overwhelming situations. The amount of understanding, experience & mutual support is wonderful. Please know that you are not alone in feeling so overwhelmed, beaten & broken. You desperately need to find more support, both practical & emotional. How could anyone not be overwhelmed by that lot of problems? Another big help to me has been Mindfulness. If you're interested, try the book & CD Mindfulness for Pain. It takes practice, but I`m so very grateful that I persevered, as it's now worth its weight in gold to me.

Well done in asking for help on here ~ that's a first step. Search for all the help you can ~ it's out there, but takes a bit of effort to find!

Sending you much love & support,

Chris, xx

Hello Brandy4,

I became unwell aged 18 after a serious bout of glandular fever; I just never really recovered. After a few years I was told I had ME and pretty much left to my own devices. I took part in a medical trial at Addenbrookes in Cambridge when I was about 22 that was looking into possible treatments for ME. We were injected with various stressors and given a low dose of steroids and apparently I was the only one in the entire trial that showed no improvement and my bloods came backwith unexpected results. I was told "we don't know why" and then left to myself again. My GP started to suggest my illness was "all in my head" and I was put on various antidepressants for years and years, none of which ever particularly helped.

Fast forward twelve or so years. After my second pregnancy I developed bad back pain. The entire pregnancy had been marked with severe hip pain and then afterwards this back pain. I went to the GP, they ran the usual bloods, they came back fine as usual, I was given a painkiller and left to get on with it. And so it continued for the next nine or ten years.

By this point I was 43 and I looked really ill. My daughter was teased at school because the kids said I was a drug addict - I looked terrible. I could barely function, fatigue was crippling. I'd tried it all as conventional medicine had no answers for me: hypnotherapy, reiki, homeopathy, diet changes. Nothing worked.

In the end my husband marched me to the GP and I went through my usual gripes: I am achey, my hands hurt, my knees hurt, I am so tired all the time blah blah blah. The GP says he will do some more blood tests, but I've been down this road before, they are always completely normal. Then he starts making noises about fibro. I have had enough - as far as I can tell ME and fibro are diagnoses that simply mean we don't know what is wrong with you and we can't do anything to help you. So I get up and my hand is literally on the door handle when the GP asks if I ever get back pain. Yes, I say (it's in my notes! Do you not read them?! I add mentally). I had been very stiff in the mornings and if I stood for a long time (say more than 5 minutes) my lower back would become incredibly painful for years but because the pain and stiffness always wore off once I got moving I had never mentioned it to the GP. And so he ticked the box on my blood forms for another test.

Well, guess what - that test came back abnormal and I soon found myself in the rheumatology department where an MRI showed that I had severe inflammation throughout my spine and SI joints. I actually had a disease called ankylosing spondylitis and my rheumy told me that was what made me so tired all the time and achey. I had never had ME at all. Now I am on the right medication the difference is unbelievable. It is not uncommon to have AS and never have inflammation showing in your bloods, but my GP always took my blood results as the be all and end all. It took 25 years to get a referral to any kind of specialist.

So, if your back pain gets better when you move or you are stiff in the mornings then consider AS (I'd never heard of it when I was diagnosed, I had no idea I was describing text book symptoms). There is a specific blood test that can help in diagnosis although you don't have to test positive to have AS and you can test positive and not have AS. About 98% of AS sufferers test positive though, the test is called HLA B27 - it's a kind of faulty gene you inherit. About 8% of caucasian people have it and the percentage differs in other ethinicities. I believe it's a hang over from neanderthals! The back pain is usually around the SI joints (where your spine slots into your pelvis) but I have heard people say they were always told it was sciatica prior to diagnosis. Have you ever tried anti-inflammatories? I found naproxen actually helped significantly. My rheumy put me on it before I'd even had the MRI. It showed that the pain I felt was inflammatory for a start! It may be you DO have ME, I just think there is no harm in revisiting that diagnosis every so often.

I know how you feel regarding being unable to work as I was the same. My last job was 20 years ago and I was sacked because the brain fog meant I was simply unable to function in the work place. I then worked for myself as a web designer for many years, but it's a dying profession I think. There are so many cheap online web page building sites and on top of that my skills are very rusty after bringing up 2 kids. AS is a flare condition and so I still have bad episodes, but my meds have it under control most of the time. After 20 years though there is the mental issue to overcome and I still worry I will go back to the terribly ill person I was before.

Your family and fur babies would be devastated I am sure to know you think as you do and they would not be better off without you. We live in a society that puts a lot of truck in status, work, possessions etc. and this leads those of us who cannot function "as normal" to feel inferior or inadequate. But we can bring plenty to other people's lives and I am sure you do. When I feel this way I look at my kids and my dog and know I am the most important person in their lives (well maybe not so much the dog, he's the type who likes things very much on his own terms!) And how would my husband cope if I wasn't there to cook for him - he'd bloody starve to death! I have been shielding during this lockdown due to my meds (they are immune suppressants) and so I wrote a story as I was pretty much in a room on my own most of the time. I sent it to my friend in Australia to read as she was between jobs and a bit down and she's turned it into a little job for herself, proof reading it! It's 80,000 words long, so I guess it's a novel! I'm not sure it's any good but she's been very encouraging about it and once I finished I did feel a sense of achievement. So what are you good at? What do you enjoy doing? What do you do for your husband or mum or fur babes that they really love? As there will be something!

Big hugs to you Karen

Brandy4 profile image
Brandy4β€’ in reply to

Hi Karen,

Firstly, I would like to thank you - and all you amazing, wonderful, kind and supportive people on this community for all of the amazing messages you have sent to me after my darkest hour, it honestly has helped me tremendously, so thank you all, from the bottom of my soul πŸ™πŸ’•πŸ’•

I will be replying to everyone by private message soon, but the past few days I have been doing so very well, and filling the days with organised checklists, so I know now - every single day for the next week now, what I need to do every step of the day, and do that until it becomes routine.

This is so I feel like I have a routine, and although I don't get paid to be ill at home, I do work - usually WAY too much, due to the guilt I have felt up until now about my poor husband having the entirety of both of our huge financial obligations. But I now have a plan, and it's already been implemented 😌 I won't be doing that again! 😁🀞

Which, I might add just now, neither of us have ever been in such a scary place in terms of finances and having to borrow huge amounts of money from both of our amazing mums just to pay for the essential bills and wrack up huge credit card bills along the way, just to pay for things like fuel, to get back and forth to Mammy Maureen's, get to Chiropractor appointments for Drew last December, to get back and forth to the vets with our most handsome, gentle giant Harvey boy in January etc etc. as we both have always had to look out for ourselves our whole lives financially and I have/had a big issue with asking for help.

But both of our wonderful mums, very thankfully after everything, we still have with us and they are both doing as well as can be expected at the moment, but we had my mum up yesterday afternoon/evening and I got a hug from my Mammy πŸ₯°πŸ₯°πŸ₯°

And now I have a full fridge and freezer and cupboards - with good, healthy and nutritious food for me too, as before I always did the shopping and every penny I had went on making sure my man and my furrbabies were well fed, but was so used to not eating that my weight was terrible, even before that awful tummy bug, and crippling sciatica pain, and now I am terribly underweight, but I have a daily checklist to help me remember to eat!! πŸ₯°πŸ₯° Best feeling EVER!!

After not being able to get a hug from her in the best part of 5 months when I've been going through so much has been really tough, but last night was magical with my mum!! πŸ₯°πŸ₯°

And we are going to go and collect my Mammy Maureen (mother in law) tomorrow and have a great day with her, and we can hug her too!! And she, more than anyone else I know right now, needs like the world's BIGGEST HUG πŸ’• πŸ’• πŸ’•

I also spent about 10 hours writing a reply to a poor young woman on here who is only 19 and feeling exactly what I have been feeling like, and I wanted to really be open and honest, and break down into bitesize bites all the crap I've been through in my life so that she could feel open and safe enough to do the same with me- doing that helped me ENORMOUSLY GUYS AND GIRLS!! πŸ₯°

Only thing is, because I was new to this site and not exactly a friend of technology, purely due to my generation, I ended up spending the whole day and a couple of hours the night before writing this broken down easy to digest, light and hopefully helpful (almost) novel (probably, hopefully like this one is 🀣).

Only to go out to get one of my furrbabies in, Tako (my beautiful, handsome, extra special Full Breed - the only pedigree furrbaby we have ever bought, but he is truly a magnificent example of the breed, again as soon as I figure out how to do this I will post photos of all of our furrbabies, we also have THE most stunning place in the world to be outside, the views from our garden are just ridiculous tbh and we absolutely love it here, especially when the sun is shining as much as it has, and my interests that you asked me about are writing - better on pen and paper than a phone screen, and I love and am actually quite good at taking really good photos of flowers and scenery and reading books, by the bucket load and I love animals obviously πŸΆπŸˆπŸ…πŸ“™ πŸ“™πŸ“™πŸ“™πŸ“™πŸ“™β˜•β˜•πŸ₯›πŸ₯›πŸ“πŸ“πŸ€£) and somehow my hand managed to hit the back button, obviously by mistake and I stupidly deleted 10 hours of writing πŸ™„πŸ˜©πŸ˜©

As I have said, I don't have children of the human variety - due to a personal choice taken by me because of the history of my amazing husband and the sh%t he has been through in life and my health deteriorating (I have, only the four legged, hairy ones, and although I have sadly lost two of my most special baby boys, as a furrbaby mummy in two horrible and tragic ways which nearly destroyed me - as it felt to me, at the time and again now, how some evil bar - steward could ever do such a horrific thing to my beautiful sweet baby boy πŸ’” still causes me a huge amount of (understandable, I think, considering the circumstances!) ANGER πŸ’’ πŸ‘Š

On top of the devastating loss of both my super clever, calm, knowledgeable, ciggy smoking 🚬πŸ₯° Dad and my amazing, mental, if totally crazy πŸ€ͺ Father in Law in the ways we did is and has obviously and understandably caused us all a huge amount of terrible grief and tragedy.

But the old me - before becoming unwell and in pain every day and getting beaten down, day by day, month by month would be able to have gotten through these tragedies with much less undealt with trauma and stress, but even if I was well and fit four years ago when my poor Dad first got not well, I would still have been grieving for sure, but because of my life experience already I would have been much more able to cope psychologically with everything that has happened, but as the saying goes....

"If you don't have your health, you don't have your wealth"

But I have amazing ideas and positive things to be getting on with to make me feel better πŸ’•πŸ’• and now, thanks to this amazing community, I know I can now, and hopefully if I could help someone else then that would be even more amazing to know!! πŸ₯°πŸ₯° And I will write again soon to you to talk to you about more things, if that's ok? 😊 😊

One more person who found who they were again and one more loss for Depression, and Anxiety and M.E, Fibro, AS or whatever πŸ’ͺπŸ’ͺ then that is just the BEST news to hear πŸ’•πŸ’•

And as a quick side note Karen, thank you so much for your info on A.S. I have had a quick look at 7 of the 10 most common symptoms and it describes me perfectly, I am so very sorry to hear that you have this horrible disease too, but thanks again for this, funnily my brother was actually tested for the same thing just before Christmas, he came back negative, but they did find out he had two slipped discs, so this is very interesting to me. Also, my mum has had three spinal surgeries due to Spinal Stenosis and now has Titanium plates and things that look like scaffolding in her back, and I can also talk to my brother about it.

Which would be so nice to connect with my brother again properly. He was pretty broken after my Dad too, understandably and didn't deal with it well at all, and because I've been so broken -my response to my baby brother has been anger, but I digress and I really must finish this post!! πŸ˜‚ πŸ˜‚) and I will be in touch again soon, peace and lots of love and hugs from me to anyone who needs oneβœŒοΈπŸ’•πŸ’•πŸ€—πŸ€—πŸ€— xxx

So, to continue - just briefly -

πŸ’• πŸ’• Brandy snap (our newest furrbaby, a beautiful baby girl, 9 months old and just THE most gorgeous, clever girl in the world πŸ’•) our other and oldest surviving furrbaby is Bella, we rescued her from the SSPCA. out for a pee because obviously they all need everything all at the same time, just like human children 🀣🀣 but mine are just a little quieter, but no less demanding for attention and training and grooming and feeding and exercising and, and, and...... than the human variety, I can assure you all!! πŸ˜‚ πŸ˜‚

And they need a different kind of love, which I have just remembered how to feel again 😊 and I have bags of this type of love to give to my family and friends going forward πŸ’•πŸ’•πŸ’•

But the most recent version of me that happening (deleting 10 hours of writing!! I'm sure you will appreciate how much that takes to write for so long πŸ₯°) would have just sent me into a meltdown, I actually was by then saying to myself, well that was actually beneficial for me, personally and so will ripple out to all my loved ones just hearing and seeing me sounding like the old me again has done wonders for my amazing husband, and my incredible Mammy, and tomorrow my other Mammy will get the very best version of me in a very long time. I asked my husband last night how it felt to see me, genuinely feeling and sounding like the beautiful, strong and capable woman I used to be, and he said that he loved me 😍😍😍 honestly, he is such a good man, I'm very proud and lucky to have such an amazing man to spend the rest of my life with πŸ€—πŸ€—πŸ€—πŸ₯°πŸ₯°πŸ₯°πŸ₯°πŸ₯°

It is a pretty awesome feeling, but God it has been a real bumpy roller-coaster of a bannister for me and my family πŸ˜”πŸ˜”

And I now have had three mornings of waking up feeling like a different person, like a much weaker, thinner, been through the Mill looking version of me when I was having my surprise 30th Birthday party - which once I figure out how to do it 🀣I will post a photo of myself then and so people can put a face to the name πŸŽ‰ and which I want to look at again and on my bad days, look at a framed one of it to give me strength πŸ’ͺ πŸ’•πŸ’•

That was the just before I got unwell it was taken and although now it's a slightly older, wiser, worn, definitely have been very poorly version that you can see now. I definitely look like, yourself Karen, like a drug addict, it's awful 😭😭 but you can't be responsible for the way a tiny amount of mean, and thoughtless other people see you - and most, if not all of those types of awful people who we unfortunately have to share this beautiful planet with don't even know what they are saying due to pure ignorance πŸ€”πŸ€” - However, I am so very sorry to hear that you're poor beautiful children are seeing "adult" people behaving and saying those things to YOU Karen - their amazing, wonderful, incredible Mums - who as you say as a Mummy, are the most special and important people in the whole wide world to them and, I might add that I happen to think the same thing about you!! πŸ’•πŸ’•πŸ₯°πŸ₯°

I have just remembered a quick daily positive quote for a Friday, hope everyone has a wonderful weekend and we get some rain for the poor gardens - preferably at night please weather God πŸ™πŸ™πŸ’•πŸ’•

"Some people you meet in life are like sliding down a bannister, sometimes you get a splinter in the bum, but you take it out with tweezers, clean it, and carry on sliding down - or up - that Big bannister of life!!" πŸ₯°πŸ₯°

I've always liked this message, it was a meme that I had seen on my beautiful, crazy πŸ€ͺ girl Jackie after she passed away, me and a couple of really close friends, and the people who were with her when it happened, put together for her family a special box of various things, and my job - which defo helped me in the early days of coping after that - was to go through all her photos and posts on Facebook since she first joined it over 10 years ago (I wasn't lucky enough to have met this crazy, beautiful soul yet on my bannister until about 3 years ago.)

But honestly it's me myself and I, who that has (up until now, for the last 10 years anyway) never mattered to me.

I have never been a materialistic, I am just a country girl who loves animals, mountains, being outside and being with

my amazing and incredible and hard working and ridiculously talented and skilled man I am lucky enough to call my husband.

Karen, you are an incredible writer, and I think you and I could end up being close friends at a distance, just now - but with Lockdown now finally lifted for visitors and getting outside - all I want to be posting on here as of now is positive personal growth, in the hope that it could help someone else, who was in the same place as I was on Wednesday. πŸ™πŸ™πŸ₯°πŸ₯°

Thank you all again everyone for your love, understanding and support when I never needed it more, I will post again soon xxxxx

β€’ in reply toBrandy4

Ahh your fur babes sound lovely - mine is a working cocker spaniel and we call him the cockerdile as he just will not learn that he MUST NOT NIP. Excited? Nip. Cross? Nip. And he knows he shouldn't because if I scowl at him and sternly say no he will start to nibble his leg as if that was actually what he wanted to do all along. He's nearly 15 months old now, will he ever learn?!

Now, if you broach the subject of AS with your GP, make sure you are well armed with info from NASS (google them, they are very helpful, they will tell you the diagnostic path your healthcare professionals should take for AS). Some GPs still think AS only affects men and it can also present very differently in women, so even if you are negative for HLA B27, still ask for a referral - you really need an MRI to determine if you have it or not. My sister is also diagnosed with ME and CFS but because I have AS she is still under a rheumatologist, even though she has nothing showing on MRI or x-ray. In fact she only got referred because of the "family history" of AS (which is just me, no one else has it!) If you have 7 of the symptoms that should be enough for a referral.

Glad you are feeling more positive! K

Brandy4 profile image
Brandy4β€’ in reply to

Thank you Karen, I will definitely do that πŸ₯°πŸ₯° my God - I actually feel like a different person!! How incredible is that, after being so very, very at the end of my everything - but you and all the people who have taken the time to write to me have definitely been a big role in this magnificent change and growth πŸ™πŸ™ Thank you, and I hope you have a great weekend!! πŸ₯°πŸ₯° Take care xxx

Batty1 profile image
Batty1

Hi Brandy4,

I don’t have ME but after I had thyroidectomy for cancer I developed this debilitating Psoriatic Arthritis that has along with no thyroid destroyed my health and absolutely sucks every stinking minute out of my life, I think about it constantly I can’t stand or walk for any length of time and my weight is horrible which really gets me down because prior to Thyroidectomy/ PSA I was fit and healthy.. I should mention my psoriatic arthritis attacks the tendons that attach to bones in my body, it’s such a joy!

Have you have a complete Vitamin panel done? I found when my D3 level was low in the range my pain would get worse and then I started supplementing D3, K2 and Magnesium and my pains reduced and my stress reduced (magnesium is magic) for moods. I also took Cymbalta for a short time it worked pretty good but it interacts with thyroid meds.

CRPSplus profile image
CRPSplus

Hello Brandy4,

So sorry to read of your circumstances and suffering. There is one major benefit of engaging with a site such as this: you are with friends who can genuinely empathise because of their own experiences, often with highly complex conditions misunderstood by medical professionals. So don't give up hope, there are people out here with understanding and a friendly ear.

Gabapentin/pain:

Pain first. It is important that you know what elements of your pain are muscular, joint, or other, as they will 'signal' differently. You are likely suffering from more than one type each with it's own pattern of manifestation. As these will go off at different times from each other they will create the illusion of a wall of various pains/symptoms, even innocent pins and needles can become violently painful. Try to note down (literally) how your pains present & when. Focus on them as individuals and get to know them. Give them names or allocate them colours and put them in to groups or stand alone operators or events. Also, score their individual intensity using a simplistic scale of 1 to 10, 10 being able to render you unconscious (yes, that violent). Over a surprisingly short period you'll build a pattern. Use this pattern (don't worry how mad it seems to get or sound) to describe your pain condition/s to your medico's. You might be surprised at what they can pick out of it, and you might even surprise yourself in gaining better understanding, and you also need to be wary of what all your pains might be hiding - that is truly important (life saving). You've likely already been asked to give your pain a score, the difference here is you are scoring the different elements not the overall.

Gabapentin has a varied reputation, but then again so do all drugs & medication. Personally I have been on extremely high doses in the past (2700mg daily - not hospitalised). It was useless. And it was useless because it was mis prescribed not because it was poor medication. It simply slowed me down to one strep short of a zombie and I lived in an unpleasant fog. Not anymore thankfully. This is where that described above becomes THE most useful tool in your toolbox of self management.

I note you have mention Amitriptyline. I have history with that too, yikes that got scary! Again, mis prescribed (for my conditions), and no longer a part of my life.

Are your stomach/sickness problems being caused by your medication. Are you having your kidney function regularly checked via blood tests?

Life can seem broken - you along with it, but this can often be a product of frustration. Understandable frustration. You're not broken. You are a living, breathing, and thinking being doing what you can day to day, and there's a lot to be said for that. Well done you. Keep reaching out, keep doing all you can to keep managing the illness within you. Don't fight it, don't 'battle'. Do your upmost to understand as much as you can, understanding by monitoring and noting - offering you the opportunity to present coherent descriptions to those that are there to professionally help - even if they are mad-crazy-swivel eyed description of the alien in the original Men in Black with a skin that don't fit. I've actually used that!

There might not be a cure, but there is the possibility of comfort. Not what everybody else defines as comfort, but yours. Comfortable enough to feel more relaxed and begin to move forward in micro steps. Sounds like a goal?

I wish you all the very best for better tomorrows. Keep trying, never give up.

red1309 profile image
red1309

My heart goes out to you! I have lived with chronic pain from RA since age14, I'm now 50! The past 3 months my joints have hurt more than they ever have, I have no explanation for it. Years of dealing with several conditions that feed off each other does take a toll on mental health and well-being. Three years ago I was so sick...I lost over 70 pounds, had multiple vitamin deficiencies, and now have permanent esophageal damage from regurgitated stomach acid. I got my affairs in order, I was finished. After breaking down, I said I'll try ONE more time. Finally, a MEDICAL STUDENT listened to me. I had developed an several histamine allergy from the Cymbalta I had been taking since 2005! It has taken over 2 years to recover and reverse the malnutrition issues.

The 2 year wait for counseling is unacceptable! If you have insurance, CALL and talk with an RN caseworker. They can advocate for you and often times, can get much better results with appointments, prescriptions, and sevices in your community.

I truly understand how hard each day can be, but PLEASE don't give up! Focus on YOU...do not worry what others think about how badly you feel. Do not concentrate on what you aren't physically able to do...your body is fighting this battle with you. Lastly, self-care! As women we put ourselves and our health last on the list...start a new one where your health and well-being is first!

Slp2 profile image
Slp2β€’ in reply tored1309

Hi Red,

I have seen an american youtuber video where he explaind that plant base vitamin C ..moringa leaf poweder helped him a lot in RA problem. Acidity problem makes this worse. Check Vitamin C role in RA treatment.and do check about Pranik violet healing as an alternative therapy.it might help you as this is self healing and without any expense.

RoseFlowerDew profile image
RoseFlowerDew

Hi,

I just saw the title of your message and haven’t read it all but I’ve been totally broken by pernicious anemia and would say that illness opens us up to everything that is difficult to cope with. Hang in there. Also visit the pernicious anemia board just to see if anything makes sense to you.

Hang in there and good luck

Slp2 profile image
Slp2

Hi,

After reading your post.i think all of you ppl try some alternative treatment therapy too.like acupuncture ,sujok and pvh.last two terminology can be searched on google or youtube. PVH is self healing no pills no expense therapy.try it.it may help you like it helped me.and try not to eat acidic food. Life is too precious Brandy.

Not what you're looking for?

You may also like...

Diabetic neuropathy - a little unusual

Hello all. Let me tell you about myself, for all who may be interested. When I noticed a balance...
DozeyJohn profile image
β€’

PERIFERAL NEUROPATHY

hi, my name is Eddie and I suffer from peripheral neuropathy for nearly 3 years. It is slowly...
eddymo profile image
β€’

Small fibre sensory neuropathy

I am 100% sure this is what my problem is. Saw neurologist nearly two years ago because at that...
Twitchen profile image
β€’

Advice,help and thoughts please as feeling increasingly desperate! :'(

This may be a long post but I think it's only fair to give anyone who's kind enough to read and...
tigerlily72 profile image
β€’

New to HealthUnlocked, have Peripheral Neuropathy and need support.

I'd been tripping over for many years, it became a bit of a joke and I thought that I was just...
Lizziesview profile image
β€’

Moderation team

Foggys_support profile image
Foggys_supportAdministrator

Popular Posts

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.