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Learning more about my conditions - Degenerative disc disease & nerve damage

JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
edited February 20 in Disabled people
Hey everyone!
My name is Jenna, I'm 24 years old and I live in North Wales.
I want to share a story with you...feel free to click off this whenever you want haha! :)
Sooo around five years ago, I began experiencing sciatic pain down one leg...it took a long time for me to be referred to my local hospital but I pushed and pushed!
After around two years of pestering my GP and receiving different treatments for my sciatica, I finally got the MRI scan that I needed...I had a disc prolapse and it required surgery at a specialist hospital! I was put on the surgery waiting list straight away as I had already received different nonsurgical treatment which all failed to work.

When I was initially put on the surgery waiting list, I had a new MRI scan to ensure my results were up to date...they then had those results for 12 months, despite me calling every few weeks to find out a rough date for my bilateral decompression discectomy.

As time went on the sciatica got worse and began causing problems in both legs; when I finally saw a specialist after 12 months, he told me I no longer needed surgery as the disc had shrunk and returned back to it's original place...however I was still experiencing more and more pain and all he could come up with was that it was permanent nerve damage caused by the disc prolapse that had been pressing on my sciatic nerves for many years.
He wanted to confirm that surgery was no longer necessary by repeating a scan, which is when he told me that I have degenerative disc disease which is very visible in three places in my lumbar spine but also there is one starting higher up in the spine.

I have become very lonely over the last five years as people don't really bother anymore to check on me, obviously apart from my mum, my sister and my boyfriend who are all very very supportive of me.
I would love to meet different people with different backgrounds, just to share experiences and maybe even exchange knowledge on the condition or on other conditions.
I am worried that 'DDD' may affect me more and more as time goes on. The one thing I would love in life is to have children someday and I can barely lift a kettle of water, let alone a child at the moment, so things like that do get me feeling down...so I just want to talk to people who may be in similar situations.
I was forced to leave my 2 jobs - in retail and in childcare, so at the moment I'm trying to search for a job that is obviously less strenuous. I do have a meeting coming up, with a lady from Scope who will aim to advise me in the best way.

I hope I hear from different people soon and I applaud you if you get through this long story!!

Replies

  • Sam_ScopeSam_Scope Posts: 2,459Administrator admin
    Hi @JennaLJ1992 welcome to the community and thanks so much for sharing your story!
  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
  • ChrisKzChrisKz Posts: 33Member Whisperer
    If its anything like my spine . you will be basically left to get on with it . Mine is in lower spine with numbness in left leg . No surgery will correct it as no health bone to screw a plate etc to. Had 3 different consultants and same conclusion .
       Having Osteoarthritis as well now .... all i take is 30/500 codeine phosphate /paracetamol ..... No real help is available
     
  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    Hey @ChrisKz thank you for replying!! I didn't think much could be done! I have it mainly in the lower spine with numbness in both legs so it's just something I am learning to get used to! I am on 20 tablets a day which are literally useless but because I had to take them for so long before they would possibly take effect, my body is now dependent on them! So I can't really come of them without the help of a GP! It's a shame nothing can be done really!!
  • ChrisKzChrisKz Posts: 33Member Whisperer
    Sorry if I upset you with the news . I have just about tried every med inc morphine ( i refused to take it after 2 weeks) . The side effects were worse than the pain and actually aggravated my disability . I just take 30/500 codeine and keep warm . Biggest problem is weight gain ( because not active due to illness)  , so watch your diet . I gave up smoking and side effect is better taste .. lol ... so from a 13 stone to 18 stone is a shock ... It doesn't help having extra pounds ... I'm constantly going on a high protein diet ... It works for me , but each to their own . Depression etc actually accentuates pain and discomfort , so its worth telling doc and getting more help
  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    You haven't upset me @ChrisKz don't worry! I have had this problem for over 5 years, but have only just been told that it's DDD rather than something that could be helped with surgery! So that's been hard to take in.
    I used to walk everywhere so I have been up and down with my weight recently due to lack of activity and I feel the pain more from time to time.
    I am going to go back to swimming to see if that helps! I'm glad you've quit smoking! Despite your weight gain, you'll be much healthier on the inside in the long run! :smile: Thank you for your advice! It's nice to speak to someone who understands what I'm going through! 
  • ChrisKzChrisKz Posts: 33Member Whisperer
    Mine started when i was 18 ...... i worked up till 2002 when i was properly diagnosed .. along with Osteoarthritis. I'm 57 now ( i think .. lol)  . I actually bought a hot tub with my disability  benefit ( leisure centre is around the corner from me ) but cannot use as joints too painful . Much easier to go into garden and have a tub 3 metres away from bedroom . so its in/out and into a warm bed  on a really bad day . The heat and the massage of the jets relieves a good 90% of the discomfort/pain . Even a tens unit helps . I used to wear a weightlifters belt as tight as i could in order to keep working ( welder/ fabricator) so was a very physical and demanding career . That helped too . but in hind sight , I daresay it may have masked the damage my spine was in
  • smannismanni Posts: 7Member Listener
     Hi I have several bulging discs in lower spine that are pushing on sciatic nerve causing constant pain in back, hip and down right leg to my foot. I take between 6 and 8 co-codamol 30/500mg daily, Pregablin 150mg twice a day. Amitriptyline 25mg at night. None having any real effect. I work still at the moment in a secondary school who have been great, accommodating me so I don't have to walk too far and through occupational health getting me a comfortable chair. I have had physiotherapy, hydrotherapy, acupuncture and various injections into my back and hip from my Pain Clinic. A surgeon has said my back is not bad enough to operate on so more injections which means more time off work. I am worried I am going to lose my job because of all the time off I have had to have and I have been told I have Fibromyalgia now too. Cant take much more, but luckily for me I an amazing partner who helps me loads both physically and mentally.
  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    Wow, a long time they @ChrisKz it sounds really painful! My dad (also 57) has similar problems to me and always used to use a weight lifting belt! He worked for Hotpoint as a factory worker...he still suffers from time to time but he isn't too bad! I am sure someone in my family has a tens machine, I might try it!

    Oh wow @smanni that sounds painful! My tablets don't help me at all either, I used to be on amitriptyline but was taken off it because it was useless! I'm now on Gabapentin for my nerve pain! That doesn't work either but it may be an option for you to look at :smile: I hope you don't lose your job! I'm on long term sick from my job! I have to just keep reporting in every so often! It's just frustrating not being in work...surely they can't get rid of you for having a long term condition? I hope things go well for you and you keep your job!!
  • smannismanni Posts: 7Member Listener
    Hi JennalJ1992
    thanks for your reply. I was on gabapentin but they didn't work so Pregablin is the next one up. I was on 300mg twice a day to start with but walked round in trance (kind of stoned lol) so asked to get them to drop the dose which they did. Im 49 so should be enjoying life not having to go out on mobility scooter. Think im safe at work at the moment fingers crossed because I love my job
  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    Gabapentin is useless with me too! Maybe I need to go for something else! I know my GP plans on changing my Gabapentin next week if it still isn't working so fingers crossed! Ohhh wow, you're young too @smanni ! I say the same! I am 24 and I have a walking stick and a wheelchair! It's horrible to be like this! I completely understand where you're coming from. So what do you do in the school? Are you a teacher/teaching assistant? 
  • smannismanni Posts: 7Member Listener
    Im a teaching assistant at a secondary school but im in the behaviour unit which is challenging mentally but I love it. The kid's just accept that I walk with a stick outside and very slowly lol and I have a bad back
  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    What a lovely job for you! That's what I want to be! I am qualified to work with children so I will definitely have to look into finding a job within an older age group as I have spent most of my time lifting babies and young children!! Not a good idea anymore! I walk with a stick outside too! It's good having something there for confidence! 
  • smannismanni Posts: 7Member Listener
    Unfortunately I need a stick to help with walking with the pain I get in my leg from the back pain. I have been told I need to use 2 really but too stubborn to. I just say this will not beat me this chronic pain. I used to work with primary school kids but much prefer older ones, they are cheeky, rude at times, swear at you but the highs definitely out way the bad days. I am now waiting to go back to pain clinic for injections for the back and leg pain. You are so young to have this.
  • MolMol Posts: 48Member Whisperer
    Hi JennaLJ1992, 

    Like you I suffered for the las t 5/6 years with chronic pain in my neck and shoulders also in my knee's. All the doctors I saw just kept saying it was muscle pain,

    I eventually had an MRI of my neck in September 2015 after serious moaning to the doctors lol. They then found I had C5-C6 degenerated disc disease also I had bone spur which was squashing my nerves hence all the pain.

    I had the operation in August 2016 and I am still in chronic pain. I had the surgeon send me for Xrays in January 2017 for my shoulders only to find out that I have osteoarthritis in both shoulders and bone spurs in both.

    They are arranging for me to have steriod injections in both shoulders to try and control the pain, They said I would need 3/4 injections in each shoulder as they were bad.

    I have had every pain killer that they can prescribe including morphine but nothing works, what morphine does is make you sleep so you do not feel pain but that is no good as you have no life as you just sleep day and night.

    I am back taking Gabapenten and Naproxin to please the doctors so they cannot say I am not trying. I have also been told I have Osteoarthritis in my hands, wrists elbows, knees, ankles and now when I walk for a short period I get lots of pain in my hips and lower back.

    I have returned to work after 6 months out and they are making adjustments in my place of work. My problem is getting to work as I struggle daily to get up and get washed and dressed on my on most days.

    I am Lucky that I have a loving partner who helps as much as she can. I am only 49 years young but feel a lot older lol.

    I refuse to give up and just sit in one place no matter how much pain I am in. All the doctors do is try to get you to physiotherapy as quick as possible so they can give you exercises to do.

    Once you say you are feeling a bit better they tell you to continue with the exercises and they discharge you and let you get on with things. They only give you so much physio as it affects the hospitals budget, its all about money now.

    I have applied for PIP and I am still awaiting their reply about entitlement, I also have Haemochromatosis, Nash( Non Alcoholic Liver Cirrohrosis, Diabetes, 

    All of my conditions effect my joints so I am limited to what I can actually do, also I have lost a lot of movement in my right arm which prevents me doing simple things most days like getting dressed.
  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    Oh bless you @Mol I can't imagine what you're going through!! It's frustrating being told what to do by doctors when they have no idea what you're going through!! Keeping active etc...is so so hard!! I receive PIP so no doubt you'll get it!! My conditions affect my life a lot and that's what they expect to understand!! :) 

    I have my sticks @smanni and they give me confidence while I'm out and about but the specialist told me to try and go out without them!! I have regular falls due to muscle weakness and they don't understand what we go through!
    I have a friend with similar problems to me and she sleeps with an electric blanket under her sheet in bed and chills out at home with it underneath her and she gets so much relief! So I may give it a try!! 
  • MolMol Posts: 48Member Whisperer
    Hi Jenna I always seem to end up with my soft brace around my neck and end up sitting up to fall asleep.

    If you do what the specialist says and you get seen by DWP I will have a wager that they will say you can walk on your on without aid so they will stop your payments,

    Nothing will surprise me after some of the stories I have read on here. b

    I have a walking stick but my hands and arms hurt when I have to use it, trying to explain that to DWP is like banging your head on a wall lol.

    I have found that if you are able to get to a swimming pool and get in the water you end up feeling a lot more relaxed and can move your joints more freely.

    The only thing to remember is do not over do things, what I did was to try and do as much movements because the pain eases in the water, unfortunately  when I got out of the water the pain returned then I felt all my joints hurt.

    I normally find that when I go to the Caribbean I go into the sea and stay in the water as long as I can without doing too much movements I get out feeling more at ease.

    I really feel for you, at your age you should be out being able to enjoy life, I always say to myself life is what I make of it,  I stay in I am in pain if I go out I am in pain so I just try and get on with things and enjoy every minute of every day.

    I refuse to let any illness stop me doing what I want, I also believe that being positive helps me to carry on. Everyone has to learn their pain boundaries then it helps with how you plan what you want to do and how you will do it.


  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    I like your spirit @Mol you're thinking positive!! I have noticed that if I do something one day, it then takes me around 2 days to recover!!
    You never know how you're going to be from one day to another! I've learnt with the DWP that you can't be too honest otherwise they'll take it as if you were totally capable of certain activities! 
  • MolMol Posts: 48Member Whisperer
    You are the only one who knows your limits, I try doing as much as possible every day to try and keep active. 

    As you mentioned we are all limited to how much we can actually get done, all we can do is give our best shot without getting into too much pain,

    It is difficult to do things and sometimes,  I end up in agony for 2/3 days or sometimes longer. But after the pain I look back and say to myself at least I did it, and it was worth the effort.

    Degenerative disc disease is not really a disease, it is said to be wear and tear of your joints. Also the doctors always say that it is caused by inflammation, 
    They cannot explain what causes inflammation though.

    I do not know why they do not like saying the word osteoarthritis because that is what it is. They seem to think if they say Arthritis people get scared.




  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    edited February 20
    Yeah! I do get more stiff if I don't do anything so I try to keep active too! 
    I've been diagnosed with arthritis in my knees but I've always had pain all over my body, in my back, hips, feet, arms, hands, fingers, shoulders etc...
    They just won't listen to me and do tests!! I remember waking up every night as a child with pain and the drs always put it down to 'growing pains' but I still to this day have the same sort of pain and I stopped growing many years ago haha! 
  • MolMol Posts: 48Member Whisperer
    They never listen it took 4 years of moaning about pain for me, luckily I had to see a rhuematolagist and when I went it was someone who I had never seen and was a lovely and very experienced man. After reading my records and doing an examination he sent me for the MRI.

    I hope you get listened to soon by your doctors, just keep nagging them lol. They keep saying mechanical pain to me but then they say nerve pain and muscle pain so I just normally laugh.
  • JennaLJ1992JennaLJ1992 Posts: 11Member Whisperer
    Sometimes it just takes one specialist or gp to help you get somewhere!! 
    I am on a 9 month waiting list for pain management at the moment, but I have a drs appointment on Friday; I just hope he'll help me in the meantime!! 
  • MolMol Posts: 48Member Whisperer
    I have had ion a steriod inject in my thumb as I have trigger thumb and the pain was really bad. It has made a big difference as pain has been reduced. Ask your GP for all your options.
  • smannismanni Posts: 7Member Listener
    Hi Mol, it was the rheumatoid consultant that finally told me i had osteoarthritis, ( which I've had since I was young) and that I have fibromyalgia. There are trigger points on your body that they test. I also have carpal tunnel too as well as several bulging discs in lower spine which affects my walking distance or how long i can stand for, or not lol. Funny how we all say it won't beat is.
  • MolMol Posts: 48Member Whisperer
    I was told I had tennis elbow firstly about 4/5 years ago, then they said I had Carpel tunnel in both hands, At the same time they found I had sleep apnea, 

    Then they said I had kidney problems, then said my kidneys were ok but I had liver problems.

    They then found I had high iron levels(Haemachromotosis) but still took over a year before they started me having venesections.

    Then I had a liver biopsy and they found that my liver was scarred(Cirrhosis), they continued to do other tests  to find I had Gastric reflux.

    They then said I had IBS, I had more blood tests which then showed I had Anemia,

    I was a bit overwhelmed by this point lol, I was then told I was diabetic, and now to add to the list as if it was not enough lol I have degenerative cervical spine disease and osteoarthritis.

    I am remaining positive because that's me, I love going on holidays which I make sure I do at least once or twice a year which gives me something to aim at.

    I hope you get all the answers you need when you next see your doctor, Make sure you ask them everything you need to know not just what they want to tell you.

    I always say keep a smile on your face and you cannot go wrong pain or no pain. Go out and enjoy everything no-one knows what tomorrow will bring. 
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