Please help, I'm at my wits end!: I have a... - Pain Concern

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Please help, I'm at my wits end!

ZedT profile image
ZedT
43 Replies

I have a slipped disc and degenerative arthritis in my whole spine, and am recently recovering from the painful muscle spasm pains associated with these conditions, which debilitated me for about 5 months. I now suffer from severe chronic sciatica with horrific pain from my buttock to my ankle.

I know this is caused by my disc, but my GP and neurosurgeon are just ignoring my pain and disability, so i need to learn to manage this on my own. I cant tolerate Amitriptyline or opiates, as I have a young family and a job, and I cannot function with the side effects.

I take paracetamol four times a day, Ibuprofen three times, and i have Solpadine Max at bedtime (try to have it every other night). In general, although life is hard, i cope, but recently i find i can only sleep for four hours max before i am awake in agony. I am completely unable to get out of bed too. This disturbs my husband who has to be up for work early and that adds to my already huge guilt at being such a failure as a useful mum and wife.

So what i'm asking please, does anyone have any ideas which positions are best to sleep in, so that i am not waking in pain. Does anyone do anything to help get out of bed? I have a bed lever to help pull me up, and its great! But recently I cant help but scream out in pain, and find myself totally stuck, breathless, in horrendous pain, when i try to roll or sit up from lying down. Its unbearable. I lie there sobbing with a pillow over my face, trying to inch my leg out of the bed minute by minute.

Are there any forms of paracetamol which are stronger and might last me more than four hours? Does anyone else have any suggestions as to how to get me out of bed without waking everyone up with my screams? (Ive tried biting on a pillow!!!). I tried sleeping on the settee....NOT GOOD!

My husband wants to go camping in three weeks, to take my little girl to Flamingo Land, and despite the difficulties this will present me, I was looking forward to going. However, now i cant imagine how i am going to sleep and get up without disturbing the whole camp site!!. My husband asked did i want to try sleeping in the car? I'm going to try it and see. I would be really grateful to know how others cope with this type of pain and difficulty.

Thanks for listening.

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ZedT
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43 Replies
driller profile image
driller

I live in FL and suffer a great deal of pain, some a dirct cause of the PD, for the other pain I saw my GP and use pain patches which help. If you are in a state with clinical mary jane then I would try that

Regards

ERIC

ZedT profile image
ZedT

Thank you for replying Eric. Sadly, I live in England so I dont think Im allowed CMJ :( Which pain patches do you use though?

Maggiet profile image
Maggiet

Try to get your gp to refer you to a pain clinic. I'm not saying they are a cure for all ills but at least they know about the wide range of painrelief that is available, yyour gp may not. Also, acupuncture or a chiropractor may help. Good luck x

ZedT profile image
ZedT in reply toMaggiet

Thank you Maggiet. I have asked three times for a PC appt, and have been assured that one will arrive. However, there's something weird happening with the Drs: X-ray and scan results keep getting lost, referrals for Continence Adviser, Physio and Pain Clinic are taking months. I made myself an OT appt and she was lovely, getting me equipment I need to get on with daily life (like the bed lever) and she checked with the Inco nurse regarding my referral- it was never made!! So SHE is making that now. I intend to ring the Drs up on Tuesday to chase them a little more, but feel I am being a paranoid pest

.

At my last appt two weeks ago yet another GP looked at me and asked "What do you want me to do?" I repeated my request for the above referrals, and double checked at the end of the appt that they would be made. I did however receive yesterday a referral for the dietitian!??? I have not requested this, nor was it mentioned. i am overweight, so i assume they are trying to help me lose weight with some professional support. That's fine by me, BUT I will be using my appointment to check that the others have been made, as losing weight is going to be very hard when i can barely move! Eh i dont know....you've got to laugh :) x

Maggiet profile image
Maggiet in reply toZedT

Your other way of giving the gp a nudge - or a bloody great push, depending on how you feel - is to write to the practice. I'm at the docs every week so wrote saying I wondered if an appointment to a rheumatologist would be appropriate. I said I wasn't telling my grandmother to suck eggs but felt this may help. I was asked to make an appointment and a referral was duly made. Also it is then in writing on your file and keep a copy for yourself. I often contact the specialist department direct to make sure the referral has been made. I know, I'm a pushy type of gal! Good luck with it all, its hard enough being in pain without having to fight for the appropriate treatment xx

ZedT profile image
ZedT in reply toMaggiet

Thank you, that is excellent advice and gives me hope, and I will do it. I wasn't sure how to put it without giving them a way to get rid of me( I've heard some terrible stories on the NHS website about GPs dismissing patients though break down of trust). Your letter is the perfect way to show them I am simply asking for help, not telling them what to do. I will get straight on that now, thank you so much :) xx

Maggiet profile image
Maggiet in reply toZedT

Let me know how it goes. I also put in my letter that it wasn't a criticism of the practice or the gps and I was happy with my treatment - which I am as they all help as best they can and I can't fault them - I know, I'm really lucky. All the best xx

ZedT profile image
ZedT in reply toMaggiet

OK, that is a good idea, i really don't want to rub them up the wrong way. I will make sure to use those words and explain I'm not criticising. I'm a bit scared! But your advice has inspired me, thank you again. I will let you know what happens :) xx

ZedT profile image
ZedT

Hi p1pp1ns. the pain is always there, around a 5/10 if i take my PKs. When i sit I am comfortable for around 15 minutes, then my hip begins to make me fidget, then i have to move. If I twist or turn in a sitting position the pain is sharp. As soon as i try to stand my left leg, from buttock to ankle is gripped in a 9/10 pain which makes me gasp and moan. it feels like a super sharp cramp, but i am unable to relieve it.

Once standing i can walk holding onto things, then after 5 minutes or so, I'm upright and can walk around the house. When I am outside i can walk short distances but then have to sit down, maybe 20 yds or so, and i cannot stand for more than a couple of minutes.

The walking pain is my disc/back muscles though. The sciatica is the standing up bit. The pain that wakes me is sciatic when i turn in my sleep. I dream about it and i wake with it. It is excruciating. Once awake, if i lie still it subsides for a few minutes. But from any position, trying to get out of bed is proving to be the worst pain i have ever experienced. (worse than gall stones and four births put together!!!). It is an intense gripping sharp cramping pain at every tiny movement i make trying to get out. It doesn't go away until I have stood up for a few minutes. i honestly feel as though I would rather have no leg than suffer this for much longer :(

I need a PK to keep the pain from waking me, and i need to learn how to get out of bed. the most effective way i found so far, is very very slowly and gently rolling onto my tummy, and slowly sliding feet first onto the floor, where i get stuck for a bit! LOL. But turning is very painful and i gasp...it disturbs my poor OH. hes very understanding, but neither of us are getting a decent sleep, and he has all the extra work to do.

The first thing i do is take my painkillers, then get to stretching exercises, because without them i wouldn't even be able to walk. I am missing out on so much of my little girls life, but i refuse to be beaten, i simply MUST learn to manage this pain.

ZedT profile image
ZedT

Thank you for responding p1pp1ns, I tried your suggestions last night and this morning, and I have to say, although still painful, i managed to get up without screaming the house down. i also took my PKs a lot later (about 11) and slept until about half four, so that too was better.

I think your idea of having something stronger at bedtime is a good one, as long as it doesn't put me in such a deep sleep that i cant shake it off in the morning, so i will try to discuss this with my GP. I have heard of Gabapentin, and Lyrica, but know nothing about them, other than i think they are used in epilepsy? Have i got the right thing? What sort of side effects do they have? Amitriptyline turned me into a complete zombie, and i felt so nauseous and heavy, as if i had flu. When i had gall stones some years ago i took codeine phosphate, which knocked me out, but i only took it when i had an attack, which was every three weeks or so. I felt like i had a hangover the day after, but the relief from the pain was wonderful so i felt it was worth it. i always feel really awkward somehow asking the GP for PKs, as if I'm doing something wrong!!!

As this pain is with me every day, and seems to be getting worse, i dont want to take anything to which i will become addicted and struggle from withdrawal. Also i am scared of getting "used" to a drug, then having to up the dose. hot water bottles i havent yet tried, although i did root out my little girls Moshi Monster one last night! ;) i think it will help, as a hot shower in the morning does a little.

As i told Maggiet, my GP, and neurosurgeon do not seem that fussed about giving me any sort of surgical treatment so far. They are also not giving me any PX painkillers, i buy my own.

There's a part of me which is quite skeptical and paranoid and feels they are treating me conservatively because of NHS cuts in PXs and referrals. The months of waiting for these referrals to find out they haven't been made is fueling my thoughts on this, but i shall simply write a letter to give them a nudge, and i am going to ring tomorrow to try for an appt to discuss better pain relief.

My bulging disc was judged to be "only mild" last November, and they lost my recent MRI results. :( the surgeon sad that even if he were to operate, he didn't feel it would resolve my pain in the long run, only my pins and needles and bladder problem. Looking back, and seeing as they have referred me to a dietitian, I'm wondering if they think surgery would be risky at this point because I'm fat? Its possible. but this pain is far from mild, and its truly affecting my whole life, and that of my family.

Thank you ever so much for the useful advice, its helped a alot. :)

Calceolaria profile image
Calceolaria

You could ask for a second opinion. Why the refusal to operate ? I don't know the details of your back problem but the amount of pain and disability you are experiencing seems unacceptable. Tiptoeing around doctors fragile egos disgusts me but we have all had to do it, its a disgrace. A Pain Clinic is a good idea though. Physio? Acupuncture? Massage? Managing you pain means first of all becoming your own expert. Learn everything you can about it and meet it armed with knowledge. You are not alone out there.

Calceolaria profile image
Calceolaria

Your last response was not available to me when I sent mine. I too have had negative feedback about lower spine surgery as I would need fusion on three levels, which would not help apparently. I will be reviewed again in time. Two things - for the sciatica pain in bed, tryva pillow between your knees, lie on your side, knees bent or which ever is comfortable. This is said to take pressure off the sciatic nerve. Second, my Pain Management Consultant said 5mg of Butrans patch ( its an opiate, morphine based ) can be helpful and is a low enough dose to help but not cause side effects. Personally, although I have got these, I have never used them and i will try never to. Others are on higher doses though. I don't normally suggest stuff like this, I but I'm thinking of your holiday and idea of you sleeping in a car!! You seem very self conscious about your weight. Its important to be as healthy as possible but I believe there is no evidence that weghtloss helps back pain. The doc should not make referrals without your knowledge or consent ! Also, surgery would not be witheld because of budget restrictions. You are young, have a job and a child and need to remain useful to society.

ZedT profile image
ZedT

Hi Calceolaria, thank you for responding. Well, I am already lying with a pillow between my knees tbh, I found it helped with back pain when i was pregnant, and i think it really does help with comfort. I put one behind my back last night too, which kept me on my side (i think it is when i move that i wake). I will mention the butrans patch to my GP.

i dont know why i feel I must tiptoe around them; I just always feel they are judging me somehow. I used to be a nurse, (about 25 years ago), and i remember reading some awful things in patients notes from consultants to other doctors, so maybe that is where my insecurities stem from. I'm pretty sure they aren't allowed to do that now, but as we aren't allowed to see our notes without a ridiculously tedious and complicated application, I will never know!

I am quite self-conscious about my weight, because I used to be very slim and athletic. i intended to take exercise at the beginning of this year to help lose some weight, bought equipment etc (like many many others do i guess), but my pain is currently restricting me to stretching only. its frustrating and makes me feel low. i honestly didn't know they were referring me to a dietitian; I was (naively it seems) excited to see the letter thinking it was my pain clinic referral (which i have been waiting for since January). You can imagine how shocked and gutted i was initially! Yet, the more i thought about it, the funnier it seemed (I have a rather dark sense of humour) and I've decided not to be insulted, but rather to use that support to help me lose weight and sneakily show them that my weight is not the issue here. After all, my diet is actually very healthy, and when they see this, surely it would be sensible to assume that my heaviness is caused by lack of exercise due to POOR MOBILITY>>>CAUSED BY PAIN! ehehe ;) Perhaps then they will REFER me! *sighs....

I really wish i had the money to have massage, chiropractor or maybe a sports physio, but i had to reduce my working hours to less than five a week a year and a half ago due to my back, (I am increasing them slowly now....up to about 20 the last two weeks), which plunged us into debt. Maybe in the future when i'm back to work full time, if that happens, or maybe if i am awarded some PIP???...(no, don't laugh...it COULD happen!).

I don't feel young at all. I feel like a moany, miserable old git!!! I try very hard to laugh at my situation, because for me that helps; I NEED to stay positive. Every single day at the moment is about pain, pain pain. I'm sick of the sound of my own voice. i feel sorry for my family- i know they love me, and they never complain, only try to help, but it MUST be wearing. There is no magic wand, and you're so right, i do have to become my own expert on my pain.

I'm very grateful to you and the others who have responded to my plea. Your answers have inspired me to try these new tips, to be stronger and firmer with my GP, and to not give up trying to get some treatment and help. None of us deserve to be suffering, and it is wrong that our Health System is letting many of us down. but i guess it's up to me to keep asking until I get somewhere. I will try a phone call first, then a "nudging" letter, then if still no joy i will ask for a second opinion, and to hell with them if they think i'm mythering. If you dont ask, you dont get...right? XD

sharelle profile image
sharelle

Hi there, it sounds like you are going through hell. I have lots of questions for you. My first question is can they operate? Has this been discussed? Have they tried steroid injections, nerve blocks or ablations? From a medication point of view, you say you can't take certain meds due to side effects but some can be started at a low dose. Have you tried gabapentin or pregabalin? What about co codamol 30/500mg, tramadol or a combination of the 2? I take amitryptiline but I take it 12 hours before I wake up so I'm not drowsy and this can be started at a low dose. Have you tried a TENS machine? It is really helpful for neuropathic pain. I would be harrassing your GP regularly to check they have referred you to pain clinic and if they're no good change GP, you deserve better. I have a Tempur mattress which helps but I use my headboard to turn over or my husband! He sleeps so well it doesn't wake him and he helps me in his sleep! I also sleep with a pillow between my legs if I'm on my side or put the pillow under my thighs if I'm on my back. I hope this helps x

ZedT profile image
ZedT

Hi Sharelle, thank you, you have just made me have a little giggle at your description of you using your husband to turn yourself in bed! ehehe, Thank you for making me smile!

Now, your questions: Well, the surgeon discussed my old scan with me, saying that it certainly did show degenerative changes, arthritis, a disc prolaspe (mild). He said he thought an op wouldn't help on the back of that MRI. He listened to my symptoms and gave me a reflex exam. The scan however, was taken last year (they had lost my recent ones), and he admitted that as my pain has worsened, it is possible that there has been some changes. So he sent me for more scans and X-rays. Which I had.

Three weeks after i went to the GP to get the results and to ask for pain relief and check on Incontinence referral, and pain Clinic referrals. They hadn't had the results. They prescribed me Amitriptyline 20mg, confirmed my referrals were in the pipeline (these clinics are AT the Gps, i have no idea why it takes so long???) and discussed what i currently take for pain. I wonder if i should have taken the Ami a bit earlier? I've thrown them away now, oops! they made me feel sick for the whole day after though, and i just don't think i could put up with two weeks of that before pain relief kicks in. I've also noticed that some nights are better than others, not entirely sure why yet, but I'm going to start recording it to see if there's a pattern. really i would rather not take anything daily, would rather have the strongest relief for the strongest pain. there's definitively less pain if i have been mobile, but tiredness sort of cancels that out. does that make sense?

i have never tried a TENS machine, but i've seen them used at work in the past. I would love to give one a go, but don't know how to do that for free, maybe the Pain Clinic? You're right....it's clear from what everyone is saying, i am going to have to be a little more assertive at the Doctors. I am fed up, i am sick of waiting, i need their help. But i want to make sure the Dr/Patient relationship doesn't break down, so i need to be tactful. you catch more flys with sugar than vinegar my nan would say. but right now, i feel more like swatting the bu**ers!!! XD

superannie profile image
superannie

Hi, I have the same problems as you. I also have a gadget to pull myself up and help get out of bed. I am also only using 2 x 500g paracetamol and 1x60mg codeine every four hours. I have had to resort to obtaining some cannabis through friends as my GP said here in the UK we are ten years behind USA as usual and I have no chance of getting cannabis on prescription. Still being tested. I have found it totally relaxes my body which in turn helps with the pain. I only use it once or twice a week as the price is horrendous. The only thing I can suggest is to keep your meds next to the bed and wake a hour earlier. Take them and then after a while when you feel better, get up.

Sorry I cant help much more. Wishing you all the best. Ann

ZedT profile image
ZedT in reply tosuperannie

Hi Superannie! That's a thought, about the meds an hour before getting up, i will give it a go tonight. they are by my bedside anyway, so i could have them out and ready. as for the cannabis, well, tbh I wouldn't have a clue where to get some!!! lol.

When i was a student nurse ( oh it seems SOOOOO long ago!) i tried a "brownie" space cake sort of thingy. It didn't agree with me at all! mind you, i have no idea how much they put in it! basically I was very, VERY quiet for hours, and then fainted after being a bit sick! lolol. I heard that it's used in the treatment of MS and Parkinsons over here, but do not know how true that is. The fact is, i cant actually think of anyone i know who uses it, and I don't have much money as it is. If i ever have the opportunity to try it maybe i will have a go, but thank you for the tips.

I think my GP does not like prescribing codeine, because he thinks its addictive, well, i guess it is, BUT if a condition is chronic, I've always thought does it matter being addicted? The only thing i have noticed with codeine is that if i use it every night its' effect lessens gradually, so i try just to take it every other night unless my pain is unbearable, which on going to bed it isn't consistently. Today i have had NO meds. my tummy was hurting with a "gnawing" pain, which i reckon is Ibuprofen, even though i have it with food. And i worry i am damaging my liver with constant paracetamol......*sighs, what a blummin life eh?!

But i am having some after lunch because i'm very uncomfortable now, even though i have been pretty active this morning. Psychologically, i feel like i believe the meds effect builds up throughout the day if you take them regularly, and actually that's a good thing for pain relief, but i don't know if its true, or if its just me! But then i feel like i'm doing myself damage. cant win! thank you for your kind wishes, and all the best to you too, Zoe.

superannie profile image
superannie in reply toZedT

I know how you feel, at times the fight over depression is overwhelming! You just cant believe that you have come to this! I have just come out of six months giving into it. Let pain overtake me and just sat resting as much as I could. Then I picked up a stone in weight and got a wake up call. I am now back to keeping as active as the body allows even when it reduces me to tears which is nearly every day. I cant allow this to take over. Its a bugger hey! Never mind, as long as I accomplish one thing every day even a small thing like washing my hair, cleaning the bird bath, etc. I am fairly content. All the best. Ann

ZedT profile image
ZedT in reply tosuperannie

Oh Ann, you put your finger on it there with "You just can't believe that you have come to this!" That is EXACTLY how i feel. I'm so sorry you are struggling too. You are right, it takes a monumental amount of strength to find the happiness in small achievements every day, and look for positive reasons to keep on keeping on. It's not all gloom for me, I get huge pleasure and motivation from my littlest one Lily, who disregards my pain and involves me in her never ending antics and adventures. It is a real pleasure to be part of her world and i think to myself, "Come on, you can't let her down. If you miss this you might not get another chance". I feel i am working towards a different, but improved existence. I try to accept and adapt. Sometimes i manage, some times i don't. if i dont, i will try again tomorrow. Your courage is inspiring, thank you, Zoe x

superannie profile image
superannie in reply toZedT

Zoe, that's what I do, if today was a bit of a cock up, never mind there is always another go in the morning. We might even get lucky and have a pain free day! Whoopee doo! Serious that's one of the greatest reason in the world to keep hanging in there, your beautiful kids. Have a good day. Ann. xx

ZedT profile image
ZedT

and i to you x

mitziblue profile image
mitziblue

Been there and I would see a pain specialist to find a medicine that's right for you!!! Best of luck sweetheart!!! xxxx Mitzi

ZedT profile image
ZedT in reply tomitziblue

Thank you Mitzi, you know, it really means so much to know i'm not alone, that others have been through this, are going through this. i'm very glad i posted here on this site and had a chance to listen to you all. Thank you for your kind wishes, they are medicine themselves! xxxx

mitziblue profile image
mitziblue in reply toZedT

Sweetheart I'm glad too. It gives me a usefulness that I really needed, plus it helps me when some new symptom pop's up. Also, like you said....we are not alone. There are so many of us out there who can and do relate. Bless you, and praying you find a wonderful doctor who can give you some relief!!! xxxx Mitzi

stephen111 profile image
stephen111

Please be careful the amount of paracetamol you take, my workmate took it regular, probably too much, was rushed to Edinburgh hospital and told he had a week to live, unless he had a liver transplant, which thankfully he got, never take anymore than the recommended dosage, I take Tramadol which is a lot stronger, it will also help you sleep. its not good for everyone, it is also an opiate and can get addicted over time. worth considering, but has to be prescribed. It does make the pain a little more bearable

ZedT profile image
ZedT in reply tostephen111

Hi Stephen, thanks for the warning. As i used to be a nurse i am all too aware of the dangers of over dose and over use of paracetamol, i don't think everyone is though as you can buy it over the counter and it has become an every day medicine which people turn to at home.

Your poor friend, what a dreadful thing to happen. I hope he is better now.

I have tried Tramadol Stephen, but after reading the side effects i got a bit scared. It's not for me. i don't like medicines which might alter my state of mind. i like to be very clear headed. I hate to feel nauseous, drowsy or out of control. i wouldn't like to have a fit, especially if i were at home alone with my children. And in honesty, they didn't seem to ease the pain much at all for me. I suppose we each have our own medicine, and differences in what works for us. Thank you so much for your help and I will take care to heed your warning.

rosewine profile image
rosewine

Dear Zed

So sorry to hear that you are going through such a terrible time. I know your husband is working and you don't want to disturb him but since my husband started getting up and just bringing me a bowl of cereal and a cup of tea and me taking my tablets then and letting them take effect before trying to get up the getting up bit has been easier., I am less painful and stiff. I find that wedging a pillow between my legs at knee level makes the pain in my hip easier to bear during the night or if I lie on my back to have a change of position I put it under both my legs again at knee position and that helps. I don;t know what your financial position is but one of those adjustamatic beds might really help you with getting up, when I change my bed I will certainly be having one. When we were on holiday a few years back the cottage there had a double one and each side was independent and even my husband who hadn't got any pain issues at that time said it was the most comfortable bed he had ever slept in. You can raise the head or bottom of it and you can get in a sitting position by just changing the controls and then it is much easier to get out of bed. My husband and I have had to start sleeping apart because of my pain problems as he wasn;t getting any rest and is ill himself, neither of us like it but at least we aren;t disturbing one another now. I don;t know how many paractemol you are taking a day but the maximum should be 8 x 500mg and if you then take Solpodeine on top you are actually overdosing on paracetamol. Alot of us here find that paracetamol doesn;t seem to give very much pain relief so I wonder if there is anything else you could be prescribed. As ome of the others say if you are in so much pain a referral to a Pain Clinic could perhaps help. Good luck with everything I sincerely hope you can find something to help you.x

ZedT profile image
ZedT in reply torosewine

Oh my goodness Rosewine...I WANT a bed like that! Not sure how I'd get it in a tent though!!! eheheh ;) I did as you suggested last night, and this morning it was getting close to 5 when i awoke....that's nearly an hour more sleep, and NO yelling getting up today! It was still painful, but NOT excruciating and i could cope. So YAY! I'm over the moon! Thank you. I'm almost dreading tonight in case it was a fluke! We shall see....

As for the paracetamol, yes, you're spot on. we have to be careful to allow for "hidden" paracetamol in medicines and i do that. i have two when i wake. i have ibuprofen with breakfast about 8. Nothing at lunch time. I have Ibuprofen with tea and two paracetamol at 7/8 ish. then i TRY to take the Solpadeine as late as i can (at least four hours after the last paras). I'm not really sure if they DO work tbh!!! I still have a lot of pain, but i just try to push on through it. i know for sure that if i stop moving it's a lot worse. i work on some evenings (3-8) so sometimes i take solpadeine plus before work, in which case i don't take more solpdeine (MAX for bedtime) i am always very careful to count the paras. i suspect that its psychological, that my taking something makes me feel better. The solpadeine definitely help me drop off though, but i am wary of taking them every night. If there are times where i feel i could sleep without them i do.

What a shame you and your husband have to be in different beds at night, but i can see where you're coming from. I don't have a spare room I can go in, and as my yells and cries are the problem i don't really know what to do about that. My husband says he doesn't care, bless his cottons! When i went to sleep on the settee, he came down stairs in the early hours saying he woke and couldn't get back to sleep without me by his side. The big softy! But it doesn't help with my guilt about it at all, and really, i don't know what i will do on holiday in a tent!!! I am trying to work that one out at the moment.

I can't afford one of those smashing profile beds, but i can certainly chase up the Pain Clinic, and i have every intention of doing that today. I am making an appt with the GP and asking the receptionist to check where all these flipping referrals have got to as soon as 9am comes around (the magical time everyone has to ring up at if we want an appointment!). I have to be proactive. I will be clear and firm. Thank you for your help rosewine.x

rosewine profile image
rosewine in reply toZedT

Hi ZedT

Glad you got a bit more rest, every hour counts. It sounds as though everyone is trying to help so you will have a great many ideas to try out. A lot of people who camp have one of those blow up mattresses, you can get them from camping shops or I think Argos or over the internet. Others have a piece of memory foam cut to their approximate body size. I know when we were motor caravanners I used to lie on an old sleeping bag and then have my puffy cocoon sleeping bag on top, it all helps. Happy campingx

ZedT profile image
ZedT in reply torosewine

We have an airbed, quite a good one, but I'm not convinced. I think I'm going to ask my husband to blow it up and spend the night with me on the living room floor for a trial run!!! ;) Hmmm...the memory foam might be a good idea? I wonder how much it costs? If its a lot of money then i cant do it, but it is something to look into certainly, thank you so much Rosewine.

I would be sad not to go, but if i can't get myself up without waking everyone then i shall stay home I'm afraid. :(

It was the only holiday we could afford to go on you see as my hubby had some vouchers for camping and park tickets for three nights at Flamingoland. lily is VERY excited and I know she will have a great time if i am there or not, (she's five and has little empathy for me! ehehe) We haven't had a holiday for a few years, and i think they all deserve one, so i will stay at home if necessary.

So now i have one night to spend in the car and one on my airbed....it's almost like going camping already!! lol x

ZedT profile image
ZedT

well, Ether64, that sounds very interesting and exciting! I truly hope you have found and developed a therapy that eventually will help us all, in America and everywhere else too. Please get your site going as soon as possible and i will definitely try your suggestions.

You're right, there are some rather dubious people out there who over charge people and pray on their desperation and vulnerability, and lack of knowledge too. What awful people to suggest that you keep your clients coming back by hoodwinking them instead of curing them. You clearly have a passion for what you do which makes good patient care your goal and I commend your honesty and values. All the very best for success in your endeavors. I look forward to seeing what you have to show us. :)

JEFFBEST profile image
JEFFBEST

This could be a help. Take an extra pillow to bed and wedge it between your knees. this will keep your knees and thighs apart thus eliminating 'Hip Rotation'. while you sleep. It isn't a cure but I've found it a great help.

ZedT profile image
ZedT in reply toJEFFBEST

Ah yes jeffbest, thank you. This is a suggestion many people gave me, and i tried it last night with quite good results. Although still in pain this morning, i could control my screams, and i slept an extra hour, so a definite improvement, thank you lots :)

ZedT profile image
ZedT

Whilst i appreciate you passing on this information about Asea which you may or may not find a helpful supplement, I respectfully decline. I am currently accepting suggestions from people suffering from similar pain to my own who are not selling a product or working for a company selling a product. Thank you, and all the best.

sharelle profile image
sharelle

Hi there, me again! I hope I'm not repeating what everyone else has said but with Ibuprofen your GP should prescribe you a PPI,eg Omeprazole, Lansoprazole, etc, It helps protect the stomach from those type of drugs so means less gastric side effects. Taking Ibuprofen (or other NSAID's) regularly will help build them up in your system, it's no good just taking the odd one. Regarding paracetamol, 8 is the maximum, and be careful with other meds that they don't contain paracetamol as well. But you can take the paracetamol with brufen and with codeine and there are various combinations of them too. Ring the pain clinic and check they have your referral and you might be cheeky enough to ask for an appointment. They should lend you a TENS to try it. If it works, I have a great one that does not involve sticky pads and long wires (it was a common occurrence to walk around with sticky pads and wires hanging down my leg where it had fallen off without me realising...not a good look!) Physio or sports therapist might help too as well as pilates and aqua aerobics, they definitely helped me, until my gym closed! Have you tried using your hubby to roll over yet?! And finally doctors are there to be badgered, you can be both polite and forceful, if you are a soft touch they'll ignore you. Good luck x

ZedT profile image
ZedT in reply tosharelle

Hi Sharelle! I am off to the Drs this afternoon, armed with a list of requests, one of which will be for Omeprazole or similar, as i already have some gastric irritation from having my gallbladder removed. I was aware that Ibuprofen can cause bleeding and irritation, and try to have it with something to eat or milk, and that is partly the reason i haven't used it three times a day. But i think you are dead right, there IS better pain relief when i take it regularly, so i have to address the issue of protecting my stomach. i forgot to ask last time!! Thank you Sharelle for reminding me :)

I am only at the beginning of this trial and error journey, trying to find some effective pain relief, and i will be asking where my Pain Clinic referral has got to, as i have been waiting nearly five months despite reminding them and confirming it twice! Not at all impressed with this really. But hey ho, i WILL sort it out with a bit of badgering.

I am liking the image of you walking around with wires and pads sticking out all over the place....like a more conservative BORG from Star Trek! There is a lovely lady, whom the OT put in touch with me, coming round today. She is from Age UK actually (and really, i am a bit young for her services just yet, but she wants to help anyway bless her), and she rang the Continence Advisor for me, which is how i found out that no referral had been made. I might get her to be the cheeky one and ring the pain clinic too, that way i won't be the one to annoy the drs....maybe ;)

Thanks to people responding to my post, including yourself, i have been inspired to be a little more assertive. I am also taking my husband with me for support (and as a witness in case I need to pursue a complaint tbh). The pain Clinic should provide me with access to at least some of these services you mentioned, as we can't afford to have them privately.

I haven't used Aron to roll over yet (lolol) but i was very tempted to this morning, when at 3am i woke in agony. But i managed to turn on my tummy and do a sort of worm-like slither at a very slow pace to a standing position! (Bet that would be quite funny to watch actually!) My lucky hubby slept through it all, ehehe. I was disappointed this morning, because i had taken Solpadeine at 11.30 and used pillows between my knees, and for the last two days I have had less pain when getting up. I'm knackered now, and i've got to keep moving because rest equals pain. I will start my Ibuprofen at 8am, no paracetamol until lunch time. Its a rubbish way to live. But i know there will be good days and bad, so i will carry on trying.

If i do manage to go on this camping trip one of the things i am looking forward to is going in the swimming pool there. I can exercise relatively pain free, and my little girl Lily can play with me normally without mummy having to stop or yelling OOO, AAAgh, OuCH all the time! I imagine swimming is probably very good for pain like mine, and i wish i could go more often.

Thank you for all your wisdom and support, i will update you later tonight when i have been on my Badgering Mission! X

ZedT profile image
ZedT

Apology accepted, although it really isn't necessary. However, after looking into the product I have decided that I will stick to more conventional solutions for now, thank you.

LocalPhysio profile image
LocalPhysio

ZedT, if you are based in the UK, please get in touch with Christian Farthing from BodyWell Group in Kent. He is amazing and he will help!

ZedT profile image
ZedT in reply toLocalPhysio

Hi LocalPhysio, thank you for this name to connect to. Could you tell me if he would charge me however? We are struggling financially at the moment so i don't have the funds to see anyone privately. Also Kent is in the South and I live in the North West, but i would be happy to email him for advice if that is what you recommend?

ZedT profile image
ZedT in reply toLocalPhysio

Actually, i have just Googled him; sadly it seems there has been some controversy regarding Christian Farthing, and to answer myself, he definitely would charge me! Never mind, i will keep on trying our local services. Thank you for the thought.

LocalPhysio profile image
LocalPhysio in reply toZedT

Hi ZedT, very sorry! I just looked the posts myself. Im am shocked at the allegations. Iv only heard very good things about Christian. My apologies again. Hope you get better soon.

ZedT profile image
ZedT in reply toLocalPhysio

No worries, thanks for thinking of me anyway :)

ZedT profile image
ZedT

Thank you, message received and replied to x

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