I am 41, have two children, one is 23, and the other just 6. I can’t take my son to school in mornings, as can’t manage. Most days I can collect him, as school is just around the corner, but it’s a long path, so I struggle with my crutches. I get taxis to anywhere further than my street and school, so have hardly went anywhere in 10 months, that I’ve been on the crutches.
I’ve had chronic sciatica for nearly 7 years. I had an operation in June last year to remove a lump from my left ovary, they also lasered away the lining of my womb. My periods have stopped all together, but the pain I’ve been left in, is horrendous. I’m on a waiting list to to see a specialist.
I don’t think giving these drugs is treating us as patients properly, I feel they should be illegal. I recently read how they stop the brain from renewing synapses, and they effect muscle tissue etc
I have felt my condition deteriorates faster each year. I’m not being treated with something to make me better, I’m being fed drugs that are killing me slowly. They’ve ruined my life, but what’s the alternative? I can’t stand up, without them, never mind walk. My memory is awful, and I get things mixed up all the time.
I can’t take my son to many places, as can’t afford taxis, unless it’s to go to doctors.
It’s a very scary future. My son is scared, and that upsets me. A 6 year old telling me, he doesn’t want me to die.
I was never told about any of this, I’m angry 😡
Is anyone else going through the same? Is there any alternative?
Written by
Amanda1231976
To view profiles and participate in discussions please or .
Oh Amanda, I feel for you..I was given pregabalin a few years ago for a back problem..don’t get me wrong they helped, but after 12 months I went back to my pain management doctors and told them they had to find some other pain relief.. pregabalin I felt robbed me of my personality, my tummy always felt yucky...If you read about them, I’m sure they’re given to people with epilepsy....I know they work on neuropathic pain, they helped me... If you want to come off them depending on your dose it’ll take a few weeks to wean your body off them(your brain really)... good luck.
But if you’re not already, ask to be referred to pain management. I’m sure there will be some another form of pain relief..there has to be..
I have been on pregabalin for over 10 years, and they helped with my spasms, I've not had any major problems on them, I'm sorry they never helped you Amanda, as Deb said ask to go to pain clinic, I wish you a world of luck xx
Hi there , i have a type if arthritis called Ankylosing Spondylitis, 2 major spinal injuries one of which left me paralysed for some time so I totally get your pain & lise of being you .
Personally pregablin waa a major help but its not right for all .
But what was a game changer was seeing a Chiropractor as with. Nerve pain you obviously have something trapping or nipping it so they put everything back were it should be .
Without my chiropractor id have been in a wheelchair from the age of 15 .
Id invest in that personally ... get your life & your future back !!
Bug hugs !!!
Dont givve up hope you can move past this with the right treatment for you !!!!
Hello , the tablets you are taking are supposed to be good for pain. They do have side effects for many people even when given for other things not pain. There are many different solutions for pain including varied tablets. I refused to take them due to the fact they would make my COPD symptoms worse. You will have to try and get the doctor to look at other options in your case. You are very young to be so restricted on mobility. My son has sciatica it is not painful all the time, put extremely painful when it flares up. The photo you posted is lovely, keep looking for something that works for you, best wishes
Four people will have to take Pregabalin for it to work on just one person. That is, for the other three it won't work. This is called the Number Needed to Treat and for some drugs it is very high, that is for every 10 people taking a treatment only 1 will benefit, and some are quite low. Pregabalin is low, some things like statins are very very high, in the 100s.
So if a drug doesn't work for you, you might be one of the 3 for whom it doesn't work. You need to talk to your GP and try something else.
Hi. These drugs help some people. All of these drugs have side effects and it's not an evil plan! That's just the way it is. I take 10 different meds and they all have effects I don't like but they really help me. Maybe you need to find the right drug for you.
I totally understand hun. I have been on Pregabalin 600mg a day as well as other meds for Bipolar and my severe back pain (after an unsuccessful lower disc op). It is the worst tablet I have ever been on except it helps with the nerve pain in my back. It totally 'mashes' my brain up though and I feel it is killing me slowly! I can't think straight, I've lost my true personality as somebody else has mentioned and my words get mixed up like a patient who has suffered a stroke. Trouble is, I don't think I could handle the 'nerve' pain so it looks like I will probably drop dead on this tablet. Sorry to be negative but I felt I just had to be honest. X
We are all sorry that you are suffering it must be very frustrating. But this drug is a lifeline for other sufferers. You need to change drugs . But you need to blame your medical issues for causing the initial problem. The drug was given to you in good faith to see if it helped. It doesn’t help so go back and ask for an alternative.
I get side effects from other drugs but it’s not the drugs fault so I have to keep on trying to find something that does. Good luck.
Hi Amanda, not every medication is tolerated, you have to remember it is your body and your life and only you can speak up to the doctors as there are other meds you can try. We are all but a number to most doctors nowadays ! so you have to speak up urgently for the sake of your future and your little boys. There is probably some assistance you can get with travel etc look into it. Good luck and keep soldiering on Amanda hopefully you will get sorted out soon xxxx
I gained a tremendous amount of weight on Lyrica (pregabalin), fasticulations with arms and legs, memory blanks, possibly an aid for extra migraines, sleepiness, pains in the gut, etc. After a number of years, I started having sugar problems and began to fear diabetes. Plus all the extra weight was not helping with pain. Pain was increasing. Doctor changed it to Horizant. Thankfully. A Gabapentin encarbil type drug that works better than the Gabapentin-Neurontin type drug. You eat, take pill, and it metabolises in the digestive tract. For me, I still have painful muscle spasms but not fasticulations. Memory still fuzzy not as fuzzy. I still cannot locate words. No tummy pain. No migraines to report after this short start. I’m still tired, nod off tired, and losing weight. It helps me more than did Lyrica. Who knew? What I do know is that it takes awhile for a body to figure out how to work with some medication. Some start out making us nauseated. Some make us loopy. After awhile it starts to work , if your lucky. Sometimes you accept that you’re still in pain but not so much. You can manage. Also, some prescriptions are dosed too high or too low. Because we are all different, we metabolize the drug fast or slow. Some of us need to stay at a low dose longer than others as we are titrate up. Since we as patients need to work with our doctors, and help them help us by our following the plan of care without second guessing them. If we choose not to follow directions or be honest with our questions trust is lacking in that relationship. If this is the case, get another doctor. Anger and stress raises pain. There are no magic perfect potions for any of us. We can only hold hands with one another while we offer suggestions on how to get through a debilitating day. Breathe.
Thanks Chickapea...your post has inspired me to request Horizant - never heard of this drug..i too find i lose my words and just stand/sit there sometimes waiting for brain to engage 😑 and don't get me started on remembering different passwords at work!! i try and laugh these moments off but then feel awfully sad and frustrated with myself...
Also have managed to gain 40lbs over 10 years and do try and maintain a balanced diet but lack of mobility is exhausting and hate my body...
Bea, thank you. I did write you and loops12 yesterday, but neither message went. No copies so I’m trying again. It certainly is frustrating to be warped in pain and then, to put salt on the wound, our brain malfunctions. We just need to learn to “Oh well” it. Yes, laugh the bad goofy experience off. That’s good medicine. Practice turning the negatives into positives.
Also, check out the internet or your community for a “Rollator.” It’s a walker with wheels. Amanda 1231976 could possibly give up the crutches and lean on the Rollator. It helps me a lot to walk while keeping myself balanced. Exercise is needed to improve our disposition, ailments and good health. RLS and ice works well together especially when trying to sleep. Just remember to put a towel between your skin and ice. Horizant is marketed specifically for RLS and now neuropathy. I take tapentadol, which is not the same as Tramadol and Horizant (Gabapentin enacarbil).
Please remember that our exteriors are not a looking glass into our hearts. It is difficult to shape up, when ill, but not always impossible. Go slow. Walking is relaxing for me. The Rollator has made it possible to get out. If I use it correctly and keep good walking posture, it helps to keep some of the pressure off my back. Then, at night I pack ice wherever there is a negative sensation.
Just imagine how lovely it will be to wake up rested as you prepare yourself for work. Lucky you to still be able to work. May it always be so. May you reach your goals as I hope to reach mine. Then, new ones can be set. Oh, that sounds wonderful!
Ice is a really bad one for pain especially if it’s fubromyalgia or any myalgia type pain. I’m sure your right about focusing on positives but when your in agony the last thing you think about is positives and transporting yourself to a harnaomious place. I know what I’m talking about after 40 yrs in pain since 9 and both my mum duly qualified general hospital nurse then did specialist pyschiatric training where she then met my dad who was a psychiatrist plus all my family isimilar jobs yet all of us have had gene cancer with me the youngest at 22 but my mum was only 23 but I was youngest with breast cancer by 10 yrs than anyone else but also the most positive about getting rid of my own breasts more than the others. So whilst I agree in part with some of what you say I wonder what your history is in pain or you just someone who makes money or likes to advise on dreaming or techniques to use etc with no personal history of suffering excruciating pain yourself for years. I’d like to know. Thanks.
Chickapea I’m dying know what your taking or what your getting all this stuff your professing from. Your positive energy. Your instincts in built up anger and lack of distrust in doctors and not following directions or guidance just by what Amanda posted it’s a real pile of shhhhut that door.
Hi Amanda, I wonder if you are vit b12, iron, Magnesium, potassium deficient. Has your GP done full blood panel testing for nutritional deficiencies? I've got all of the above.
I thought nutrition couldn't affect me that much but it does.
It's really important to do some reading about your symptoms and nutritional deficiencies then go informed to your Dr. If you can, take someone with you and explain to them what's wrong and what you want from the appointment. Also, write down your symptoms and what you want from the appointment ie. Answers and outcome.
I was put on this by an osteo consultant, & couldn't bear the side effects. I felt as though I had migraine, sunstroke, flu, & was falling down drunk & hungover at the same time. The room was spinning by day 2 & I had to crawl to the bathroom as my legs wouldn't work. Horrible stuff!
I do know several people who function well on pregabalin, & have better quality of life from taking it daily.
Have you asked your GP to refer you to a pain management clinic?
Firstly ananda from a wealth of experience and the hardest things for you to do which when was said to me I went mental saying I couldn’t it was impossible to do but was forced to do following. Please don’t let your son see you in pain. I know you are. But please go out room or get him go out room so you can do anything you need to do he’s not worried. Please reassure him your not dying. My 2 kids were removed from my care along with 498 others in Milton Keynes in 95 but mine were in my health being more than 25% disabled. I had been ferried in ambulances all over London to specialists and to kxford but no one could do anything that was going to be a dead cert and quick so it was deemed by court that my children couldn’t stay in foster care for 2 yrs or more at £70k each, my treatment would cost as outpatient £20,000 or impatient £140,000 plus a yr. but 2 yrs expected. Adoption would bring local authority minimum of £32k revenue so court went with that as was no family as sisters were in fairly poor health one had endometriosis couldn’t conceive and already had stolen one of my children 4 x and was trying get her off me in court case as she was so desperate she even sacrificed her own marriage all things I found out 15 more yrs later. The other was a career woman who was looking after the mentally physically disabled adults running 3 nursing homes and apparently had 3 abortions which I didn’t know as we had been very close until ss did this then pressure forced split in family. There dad was dead due to massive heart attack and I had just had cancer and hysterectomy and wasn’t aware I was about have cancer again. After they decided adopt my kids at final day in court I’d decided I couldn’t go on, went home after verdict at 7-15 on Friday nights in court with us locked in home by solicitor at 8.20 I went see my kids gave them presents as was ones b’thday but always gave the other so neither left out. Posted letters already prepared and took 200 tablets or morphine mixed and went bed with my cat I’d left 4-5 days food as I knew I’d be looked for come the Monday tues and this was Friday. Woke up to police, dr but wasn’t fullly conscious as next I was in Mk hospital on life support drips etc 14 days. Ss write I hadn’t attenpted my life very well just to make it worse. I left my home get treatment offered at court but retracted due to cost as they’d decided adopt my kids. So I wasn’t worth treating. Been a reoccurring feature throughout my life I’ve had enough of. Hence why I’ve decided post some of these personal things as I’m fed up of dying quietly in prison and I’ve been trying to fight last 25 yrs until last 12 months when I gave up but I’ve started again with 1 last push. Anyway I left my home with everything in it after I wrote to the queen and govt then wrote to consult who was supposed to treat me who came court. He phoned next day told me make myself homeless only way we could because I suffered domestic violence was to go women’s refuge near him in another county which gave me rights to get his treatment which I did. Then I started battling ss gathering evidence of them harassing following me in oxford as this wasn’t what they wanted. I did his treatment went college went other end country 3 x week see my kids and had contract I had sign by social services not to hug my kids not to kiss my kids or tell them I love them, not to let them see I was in pain. To say wait and see to my eldest who wanted come home and kept asking whilst all the time social workers were telling her I was dying and I didn’t know but she was asking me. I created law I got my 2 back but the other 498 taken didn’t get go home. I got enquiry along with others in national news about miss illegalnasty campaign on all of us and some were solicitors barristers they made our lives hell. I lost everything and my life was made hell more and longer than rest as I kept battling then another 2 yrs unlike the rest as the others had been adopted and mine hadn’t as they made many mistakes. But my daughter remembered when I got her back my pain my disabilities if you walk with limp and leg shorter than other you can’t hide it plus I used rub my legs. I’ve many serious disabilities (17) none can get better but I want to get better than this. As I’ve been bedridden 9 yrs hospital bed 24/7 just. My daughter at 6 tried stab me when she came back because she thought I was dying because they’d been telling her for nearly 3 yrs and she’s had the wrong therapy 2 yrs by an unqualified therapist to make matters worse. My kids never forgot seeing me in pain and the limitations it placed on what we could do yet I took them park and took them places with husband in car but couldn’t walk round park or walk round Alton towers etc absolutely impossible as can’t walk 5 metres without falling down and beds on morphine 30 yrs nearly. The more your child sees the more insecure and frightened he’s going to be and whilst I know only too well it’s impossible situation for you I seen the damage that kids go through when they live through being scared and that fear drove my 2 kids away with blackmail and lies by ss who pay their clothes and rent uni college food books and support money until they reach 25 and they only started lying to them when I was started legal action against them having found out my daughters been abused in their care. I’d met their high commissioner and legal team who invited me sue. But now I don’t care as I was only doing it for them. I’d rather focus on my health than another battle as I already won and shamed them thru public enquiry and national news your child will resent you but worse he will grow up scared and no confidence and clinging to you. My 2 have seen half my family die. 4 in 1 yr in 2010 both aunties they close to their grandad and step dad all close to and they said they don’t want watch me die and they can’t put themselves thru anymore so they not staying around or in touch and slowly from being just before those deaths and around time of dads death which was third death that yr we were inseparable and me and my youngest were for another 2 yrs with solicitors and social workers of mine and hers trying to house her near me where she asked them but my other daughter was jealous of that. She’s the one more damaged by miss and things she saw. Both scared of me dying. Both seen too much death as everyone’s been nursed at home by me as they asked to. All you can do is shout scream when he’s not in house or when he’s not around you or go get in hottest bath and try to relax and also stretch and excercise your muscles same as they do in hydrotherapy. Ask your dr for pain clinic receral plus a hydro/physio referal
Hi Amanda. I noticed you have no one your now diagnosis. You only say what drugs your on and what hell your life is which I’ve wrote a long personal message that is probably too personal but I was so worried about your son I had to write it with honesty so your son is no longer affected long term as he can remember from around 2-3 yrs old. So this is already seriously affecting him and I bet it’s affected his school work play friendships and even sleep. It would been helpful had you said what’s medically wrong with you now as you e only said you had operation on lump and lining of womb but really didn’t even say what the op was which would been more helpful and also you said about your back but again your giving us info about unable go on and taxis and how bad life is but not anything we can help you with as you’ve not give us any medical diagnosis or who your referred to and how long your wait is and if your doing anything to push these things yourself. Yousee me once I’m referred by dr I’m on phone harassing them for an appointment ASAP and if that don’t work I get pals and my dr to speed it up. Also have you asked basing this on you got a diagnosis about patient transport to hospital appointments? You can’t it to Drs but hospitals you can if dr thinks so if if you have medical condition and no family or friends to take you hospital as they ask you questions over the phone. Please try his as your dr doesn’t organise ambulance transport which isn’t paramedic kind. You organise it yourself based on your reason you can’t get public transport so it’s worth getting phone number the Drs have and phoning them. Don’t ring them on day of appointments. You need give them as much notice as possible but you will need to have a medical reason your unable get bus or get someone else take you. Minimum to book these days as heavily oversubscribed is usually 2 days notice but can give upto 14 days notice before your appointments. Please start chasing down the specialist. Start hounding your dr. Start asking for a physio/hydro assessment and separate pain clinic assessment and argue you want referring both because of time delays and because the pain clinic no longer work with Physio hydro therapy which is a hot pool 98f that u excercise your muscles and spine etc in because the very high temp helps you not feel the pain and excercise which all fibromyalgia sufferers identify with but anyone with pain can benefit from very hot baths more than once day to help with pain unless like me they nicked your bath because your a risk and put a wet room in lol
As hard as it can be done can't survive without the meds.Like any drug what works for some doesn't for others maybe a change in meds would help. Hope you don't wait to long to see specialist.
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.
X
Pregabalin alternative?
