Hello fellow painfriends i am strong , i can cope with pain,i use many tools and do not stay in bed all day or on my butt..BUT ..I'm tired , I'm worn out and yes getting down ,with this constant pain from my back to my feet,an aching burning soreness with sharp hung up-ness that never leaves ,no pain meds touch it they just make me woosy which is probably what they are best at ..chilling me lol.(gabapentin 3 x 3daily + cocodomal 3x2 daily) But in all seriousness I am not sleeping properly,waking 3-4 times.My leg wakes me with grabbing/cramp like pain and numbness . Every step ,every bend is painful.Im having to go up stairs on all fours most days.Shopping is only possible when im leant over a trolley and with assistance ,or online lol. I Know the gist is its nerve pain, signals being sent that shouldn't be ,BUT that doesn't make the pain any less .I want to work but I can't guarantee one day to the next how tolerable my pain will be .Not much good for an employer ! Im lucky if i can do my own household jobs. i am worn out from it.
Latest Mri shows no further deterioration from my fall in 2009,its just nerve damage.
I was so active,walked 5-7 miles a day in my job as a dog warden,went to the gym 3+ a week ,did weights,swimming,cycled all over the place. I can't swim proper strokes any more ,Ive tried doing gym exercises in the pool and it irritates things making it very painful. I do go out on my bike for 30 mins when I can as cycling hurts less than walking ,I have made many adjustments to my cycle to make it as comfortable as possible, I use a swiss ball and bands as much as possible at home and a mini cycle (feet only thing)to stay active..but the pain is constant and any activity increases it.
I am so down ,my life seems to gone tits up and as hard as I try ,my motivation just disappears . I just don't know what else I can do. I have worked my whole life and I cant get used to not doing so .
ok rant over
love and best wishes to all x
Written by
thenunn
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Hi the nunn
If I gave your message to my husband he would have said I had wrote it. I have tried lots of pain meds latest one being fenytel (don't know if I have spelt it correct ) pain patches these I had to take of after 9 days due to swelling of my feet side effects not good. My doctor sent me for kidney, liver and glucose blood test. I don't drink alcohol but my liver test came back as abnormal test don't know if it's due to medication or diet retest in 6 weeks time. Something else to worry about. I have private physio every couple of weeks accipunture , massage and manipulation but that's not working any more been having that for 18 years. That's my rant over janet xx
Hi thenun, sorry you are feeling so low are you under the care of a pain clinic to help you?
I know what you mean about not knowing one day to the next it is difficult for employers but I think you just have to keep changing the meds until you find what suits you, I didn't realise that I was slipping back into depression through being at home and in pain but decided to try the amitriptyline which is anti depressant and pain relief, it did seem to work the first day. I was even pulling weeds out in the garden yesterday, but today feel stuck mentally and physically indoors. But you have definitely encouraged me to get out and try cycling. One day at a time is what they advise. And I have also been told not to dwell on what you used to be able to do, just do your best today and remember the body is constantly trying to fix itself naturally, so you may be able to do more again in time.
Hi you are in a bad way and are in need of some good quality sleep. Are you attending a pain clinic? You could benefit from injections to give your body a bit of rest.Its very difficult to stay positive when you are in so much pain I feel for you and know the pain you are in is getting you down. You are strong and can cope,don't give up. Will be thinking about you.xx
Hi all and thank you I have been to pain clinic and in all honesty ;as nice as they were; everything we did I'd already done lol.
Teresa,I have also read that and I do agree with and do try to live by it,as you know ..there are just some days :).
Anyway today I went to my appointment with a health advisor , a free service via the council that I found online. I felt what I need is a kick up the bum , someone to be accountable to,and we've set out some goals..mini ones ..so I now feel :)))
Who was it who said ..when life gives you lemons make lemonade ..lol
Nun, I have what you have. I'm not convinced pain in neuropathic and firing off the wrong signala. In fact my pain is said to be mechanical. Tight muscles cause pain too! Don't do strenuous exercise if it causes pain. You can't "work through" this kind of pain, especially not stenosis. If you are going to exercise or stretch, get a professional to draw up new exercises tailored to you. Pain Management put our whole group on the same, result was, I destabilised my sacroiliac joint. Sounds like you need to return to square one and start again, something we all do, disheartening though it is.
You are doing a fab job by staying active and staying determined. Even though we are strong pain wears us all down at some point and it's nothing to be ashamed of. I'm now on a cocktail of 1500mg of gabapentin a day, 200mg of tramadol, 500mg of naproxen and 30mg of duloxetine. It makes me drowsy but starting to get some benefits some days! I have also been recommended to try mindfulness for pain. There is an ebook for £6.99 on amazon. It is a fab read I have only just started and do find it hard to get into a new routine but it's worth having a look into to try a different tact!
Take care on those gabapentin trish , I know we all react differently but after 12 months of high dose like yours I started getting some horrible side effects, I didn't care at first because they numbed the back pain and I could exercise at the gym which I thought would help, as the doctors always say "strengthen that core". But my legs went so numb I couldn't walk at one point, restless legs at night, insomnia, band headaches, weight gain I was constantly hungry, crying, then the suicidal thoughts which I know was the drugs not me. I came off them slowly (which is very important) and felt much better. But Pain is back now trying other things that suit me better. I suppose all of our bodies are different and the way we feel the pain, but keep going with whatever suits you but if you are not feeling quite right beware it could be a side effect. I am doing some meditation and exercises on YouTube now. Just had second MRI scan so we will see what the next step might be. We have to be so patient with pain, but it think the body is gradually fighting it naturally and fixing itself.
I'm so sorry to hear you're feeling down. I know that continual pain wears on a person in a hurry, and it seems changes in weather (humidity, cold, etc) intensify the effect. You might ask your doctor about a possible anti-depressant to help you cope mentally with the difficulties. Please don't let it go too long that you're severely depressed before asking for help with it! Personally, I attempted suicide a few years ago and still have times I'd like a way "out" of this misery. Chronic pain sufferers have a psychological curve to deal with also...especially when it hits later in life and you can no longer live as you used to or do things you could do before.
I did not have success with Neurontin, Lyrica, etc...but I go to a new pain clinic now and can get Toradol injections (it is short-lasting relief but is a nice break from pain), also I just had my first Lidocaine IV Infusion that DID help with the pain for about 9 days! I "might" try it again as the Norco isn't working very well (dose is too low and infrequent) and the doctors are so wary of prescribing it all the time that I feel like I'm "begging" for it each visit, lol. Maybe some of those things would be options for your pain?
Sweetheart, I feel your pain. I have ruptured disks and fibromyalgia plus really bad feet as I have NO fat in the bottom. I went to a pain clinic and they gave me Opana ER, which I doubt I could live without. It makes life bearable at least. I hope this helps you!!! xxx Mitzi
Sound very much of what I am going through, I was finished work on health grounds some years ago, I was still in my forties. I took badly to this and became very depressed. I also do as much as I am able, its just a matter of pacing myself and I have learned not to over do things. I am now on a long, long waiting list to attend pain management, watch this space lol
Sorry to hear you had to give up work, that must have been hard for you. My advice with waiting lists is to keep badgering them, well in the uk anyway, not sure how it works elsewhere. I even wrote directly to the consultant and got a reply within a week, followed by injection, for my back. If you don't shout loud enough they assume you are managing ok. I learnt this when I had carpal tunnel syndrome, they did some tests and the hospital doctor explained that it wasn't bad enough to need the operation, I was gutted, I couldn't work or drive or ride a bike, but she insisted it wasn't bad enough. So I went back to my GP who wrote to the hospital and hey presto I got a date for the operation, not even a consultant appointment just straight through to the op. So keep on at them, I say.
Hi many thanks for that, I will bare that in mind, I was told by consultant yesterday that I am not the right candidate for trigger point injections, as I have pain in too many places instead he has increased my medication. I the meantime I will pester my G.P for pain management, which is now to be done in the community, I cant help feeling that I am being fobbed off, thanks again
hi, I know exactly how you feel. I have had lymphodeama for 14 years and chronic arthritis for 4 years. cannot do stairs, had to move to ground floor flat. cannot use a bath, have wetroom now. I take naproxen 8 times a day, at night I take amotryptoline which makes me sleep pain free, but woozy in morning. but they do help!!!!!!!!
I am hoping to come off tablets at some stage but trying to give the doctors a chance not to test them but to see if their advice helps I'm only 25 so I have many years of CRPS to endure yet so plenty of time to experiment with lots of different things. And yes I do get side effects from all the different tablets in different ways which I then adjust to n they wear off slightly luckily no weight gain and I keep an eye on several things with my partner being fantastic and helping me see the bigger picture of how things are effecting me as do my friends and relatives. Socialising seems to get harder and harder though with friends trying to understand but getting fed up when you never make it to see them or are asleep when they call after a day at work! Finding this forum has helped me a lot so thank you to you all
Hi have you tried acupuncture ? It did help me in the short term, also aromatherapy I am sure there is other treatments, I believe its trial and error. Also, a friend of mine who also has fibromyalgia advised me to let people know how you are feeling, having said that others who do not understand tend to keep away. I am pleased you have an understanding partner, are able to swim? If you are up to it perhaps you could go with you partner, or friends, its just an idea, hope all goes well for you.
OMG_!!!I found my twin!! Hello the nun sorry to hear from you in such pain.I hope you can find some pain relief .
I'm reading all of your post and realize I'm really not alone although I hate to know someone else is suffering from the same pain.
This is no way this is a way of life.Oh my goodness we don't deserve this at all.That's what I ask myself. I started to have my pain journey about a year now ..first it was with headaches that were so extreme and wicked shooting pain all the way to my toes.my face went tight and numb/head/jaw/chest /legs and now its the right leg where I can barely walk on it .the pain is so intense I believe that I may have a blood clot.. I know its nerve pain however I find myself now constantly looking for varicose veins and I almost have myself mentally convinced that I have clots.
I've had in total in the last year alone 5_ct scans and6 MRIs and guess what all fine.seriously I am not going crazy.. However mentality wise and physically I'm super drained like you.this had really taken over my body and my life entirely ad much as I try to keep positive and have a healthy lifestyle its next to impossible. I too do get out of bed because I work from home.thank goodness and I'm still having a tough time. My ribs are now hurting I'm on no meds yet still after being taken off lyrica/gabapentin from the leg cramped up really bad and the Dr said side effect and told me to stop.appointment tomorrow morning to find out blood and other test results one being a test for my throat checking for infections/nose plugged always and feels hard to breath certain times /like chocking sensation. Oh well I could go on and on but you get the picture.. Actually I just wish I could have just a day or two a week without any symptoms and pain free.wanting this for us all .
I am in the same boat as you and what you are going to hear is bad news
I have been push from doc to doc for 5 year with back pain and with the NHS the way it is you have a long wait
but there is a drug called Palexia you can get most doc ill not give it out due to the cost look it up on the net .It has a lot less side affects than all the others out there and this one works .
I have been on t for 20 weeks and feel great . lots more to say to you about this please email me at davidsamrichmond@hotmail.co.uk I know I can help you
I'm reading this & completly understand and feel for you as I've felt very alone for the last few years & things have got me down especially adapting to the massive changes in my life and lifestyle since having 2 failed spinal surgeries and being left disabled & with chronic pain syndrome, facet joint syndrome, nerve damage in my back and leg and loss of feeling in my leg and have restless legs since the operations and have now been told they can't fix my back its just a matter of pain control. Mine all started in January 2015 when I bad lower back pain & had sciatica which affected my right leg. I was 35, had s good job in the city with private health care as a perk of my job, I was very fit & healthy prior to this, was in the gym 4 times a week, always out socialising & enjoyed my active lifestyle. I had the flu so had a few works off from the gym & got out of bed and had a shooting pain down my right leg & my back locked up. It got worse & I tried going into work but they could see I was in a lot of pain so was sent to see the onsite GP who diognosed sciatica & gave me Diazapam and painkillers & was told to take a few weeks at home resting & he referred me to see the physio at work when I returned. I went back to work after the time off & the pain was worse than before, the physio just tried accupuncture in my lumbar spine & buttock which really hurt & aggravated my back more as it went into spasm so saw the work GP again who gave me stronger Diazapam & painkillers & again sent me home. I stayed at home for another week but work started to get funny with me so I struggled in again but couldn't sit down & the pain got unbearable & had me crying so my boss said go & see the GP again, this time he referred me straight over to a hospital near work & said I know the perfect person for you to see, that's where the nightmare began. The spinal specialist admitted me, done an MRI scan and told me I had a disc bulge and trapped sciatic nerve, L5 S1, he done a steroid epidural and put me on pregabalin, Amitriptyln , Dihydracodeine & Arthortec but he didn't check my medical history & I had a history of depression & the combination of tablets & chronic pain & pressure from my work place all got to much & I had suicidal thoughts & took an overdose, I had my stomach pumped & was taken off of pregabalin and Amitriptyln as the NHS doctors thought it was due to the side effects of these that had caused the episode & was fine in regards to depression when I came off of them. The spinal specialist who i was seeing via my private health care through my work cover said my MRI scan showed the disc bulge & trapped sciatic nerve but also that my joints were very worn for someone my age. He referred me for physio and done a 2nd steroid epidural a few months later but said if my pain didn't improve I'd need a spinal fusion done, my pain didn't improve, work started the process of trying to prove I was unfit to work so they could get rid of me even though I'd had a great appraisal the month before my back problems started & in June 2015 I went back to see the spinal specialist in tears from the pain, 6 months of not sleeping or being able to sit & being in chronic pain has got to much to bare & work where ringing me when I was in the appointment even though they knew I had the appointment to say they wanted me to see one of their doctors the following day to assess my fitness to do my job. I was admitted to hospital after seeing the spinal specialist at that appointment as he said we can't leave you in this pain we need to do the spinal fusion ASAP to get you out of pain, I over heard him say to his secretary say she has red flag signs to get it ok'd by the insurance company for surgery tomorrow morning, by this point I was on morphine as well as other drugs, he done another scan on admission & came to see me at 8.45pm at night when I was quite woozy from my meds & was on my own & he said my 2nd scan looked better than the 1st, my joints looked a lot better so he now suggested doing a disc replacement instead of the spinal fusion that he'd been suggesting for the months prior, he said the recovery time would be quicker & for someone my age it would be so much better for me as I would be able to go back to the gym once I'd recovered & he'd done 1000's if these ops & only 1 had ever gone wrong so trust him as I was crying & saying I was scared & wasn't sure about having it done, he explained he would cut open my tummy and go in that way & as long as my facet joints moved he would put the false disc in and take the old one out, I was hesitant but he assured me & said it only runs small risks like the other operation of infection, nerve damage & spinal cord damage but they were rare occurrences so I trusted him & in my hazy state signed the waiver and was taken down to surgery first thing the following morning.when I came round I was screaming and crying in pain, I've never felt pain like it and was given morphine and put on a mirphine drip with a button I could press to get more in my system when the pain got worse, I was hallucinating I had that much morphine in my system & itched all over.i was like that for 3 days then taken off the drip and put on a lot more tablets most I'm still on. I was meant to be in hospital 4 days on the 12th day I'd just managed little steps using a Zimmer frame and wanted to go home even though they wanted to keep me in due to my high pain levels. The spinal specialist hardly came to see me but wrote afterwards that it had been a success as it had got rid of the pain in my leg! I couldn't feel my leg so I wouldn't call that a success. A pain nurse wrote a letter to my GP saying how high my pain levels were and despite my stoic attitude she was very concerned about the complications of the operation & that I'd need to see a pain management test ASAP. I saw the surgeon at out patient appointments & I felt he knew he'd done something wrong as he kept putting a lot of pressure on me to let him fuse my spine, I didn't want him doing another operation on me after how that one had gone. He done more spinal injections and sent me to see the pain specialist at the hospital as well as the physio again but the physio couldn't do much due to my high pain levels. I couldn't straighten my back & the pain was worse than before the operation. I was still using a Zimmer frame 4 months after the operation. I was then diognosed with chronic pain syndrome, facet joint syndrome, restless leg syndrome and nothing helped. I went to see another specialist team who were recommended for a 2nd opinion & they said why did he do a disc replacement, he should of done a discectomy and decompression and they said I had a problem with my sacroiliac joints, they recommende spinal fusion as it was to high risk to remove the disc he'd put in but said the disc was sitting to the right side so 7 months after my first operation I had the spinal fusion,.bone graft and root nerve decompression done but unfortunately I'm still in a lot of pain and I'm still taking Gabspentin 300mg x3 at night, Oxynorm 10mg x3 a day, Topiramate 50mg x2 a day, Clonazapam 500 Microgram x4 at night, Duloxetine 60mg X1 at 6pm, Butrans 20 micrograms x 1 every 7 days, Omeprozole 20mg x1 a day, Cyclizine 50mg tablets x3 a day plus I'm on Rivaroxaban 20mg tablets X1 a day as I had a pulmonary embolism and pneumonia in November last year (blood clot on my lung). I was meant to have continued hydrotherapy and physiotherapy but my private healthcare got stopped last July so I went to my GP in May with a letter from my physio and hydro team saying I needed to be referred for hydro and physio on the NHS and my GP cocked up my referrals 4 times and I kept chasing him up & I eventually rang the hospital myself that he'd said he'd referred me to only to find out their hydro and physio team hadn't had a referral and after speaking to 7 departments eventually found out that I'd been referred to a doctor their twice who'd rejected the referrals as he'd closed his books so I called the complaints office to enquire if they should inform patients of this & was told no they'd written to my GP about it & obviously he'd overlooked it so I raised a complaint with the practice manager who was very rude to me & the next thing I got a letter from the GP surgery saying I'm out of their catchment area and I'd need to find a new GP even though I've lived at the same address for 15 years! So I've got a new GP & asked them about hydro and physiotherapy and I'm having the same problem, there's no where locally I can have it! I've been made to feel like I'm a burden even asking them. I can mobilise with difficulty on crutches, I live in my own, I've lost my job, I don't sleep due to the pain & spasms & cramps I get, I hardly see my friends anymore as its at times like this you see who your real friends are, my boyfriend left me after my first operation as he wanted a girlfriend not to be a carer & it's been a struggle to stay positive but I have good and bad days like the rest of you. My pain specialist is wanting to do the RACZ procedure on me in August but I'm scared to have it done as there's no sedation and I had more spinal injections done in April & they didn't give me enough sedation, my back went into spasm and when they started to inject me the pain my me scream and cry so then they gave me a lot of sedation to knock me out cold and the RACZ Procedure Catherterises the spine and to get me laying on my front is really painful and my back goes into spasm & I tried explaining my concerns to the pain specialist but he didn't take much notice & my surgeon said he thought the RACZ procedure was to aggressive and to consider the spinal coard stimulator & ive looked up both the RACZ Provedure & Spinal Coard Stimulators and both have risks involved so I'm thinking of saying no. Sorry for the essay, I'm just so glad to have found people who understand & who are going through similar things, I hope by sharing what our situations are that maybe we can help and give advice and moral support to each other, I know I could use some. I'm 38 but feel like I'm 68 at the moment.
Hi Hangel ,wow,that's awful ! I'm so sorry to hear of that you've been through and are still going through. I hope you can still have good times . !m at a loss what to say ..I hope you've had a decent day today.xx
Hi thenunn, thank you, I feel that I have found people going through similar things in here & just to be able to have a rant about it & hear how others cope with their problems and pain makes me feel less alone. I hope your ok & your not in to much pain today. It's hard to stay positive at times but I'm really trying, I wish I could get a decent nights sleep but it's very rare for me due to cramps, muscle spasms & RLS. I've had a bit of good news so I thought I'd share it, I've been referred to Marie Curie in Hampstead & have seen a brilliant Dr their, he's going to adjust my medications, he's putting me forward to have 6 sessions of hydrotherapy (it's limited to that amount due to the high demand) but it's a start & for physio too, he's arranging some emotional support for me & use of their alternative therapies so I will get to meet other people, it may not sound massive to others but to me it's like some help in the right direction at last. I never knew Marie Curie dealt with patients with Chronic pain I always assumed that they just helped cancer patients but my GP referred me as I had some sessions of hypnotherapy for chronic pain & the person doing it was a palliative care doctor who had decided to train in hypnotherapy & I've been a case study & she works for Marie Curie so she wrote to my GP to ask him to refer me & I feel a lot more hopeful now than I have in a while. I would say to people that are going to have spinal surgeries, try everything else you can first, check out the doctor who will be operating on you and get a 2nd opinion before making the choice to have it. I wish I could turn the clock back & not have trusted the first surgeons diagnosis & wish I'd got a 2nd opinion before the 1st surgery, private health care isn't necessarily better, some doctors seem to go for the most expensive surgeries as it lines their pockets. That surgeon is driving around in his Porsche while I struggle to walk. Sending lots of love & healing hugs to you xxx
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i am strong , i can cope with pain,i use many tools and do not stay in bed all day or on my butt..BUT ..I'm tired , I'm worn out and yes getting down ,with this constant pain from my back to my feet,an aching burning soreness with sharp hung up-ness that never leaves ,no pain meds touch it they just make me woosy which is probably what they are best at ..chilling me lol.(gabapentin 3 x 3daily + cocodomal 3x2 daily) But in all seriousness I am not sleeping properly,waking 3-4 times.My leg wakes me with grabbing/cramp like pain and numbness . Every step ,every bend is painful.Im having to go up stairs on all fours most days.Shopping is only possible when im leant over a trolley and with assistance ,or online lol. I Know the gist is its nerve pain, signals being sent that shouldn't be ,BUT that doesn't make the pain any less .I want to work but I can't guarantee one day to the next how tolerable my pain will be .Not much good for an employer ! Im lucky if i can do my own household jobs. i am worn out from it.
I just don't know what else I can do. I have worked my whole life and I cant get used to not doing so .
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