Degenerative disc disease

Snowflake56

I have degenerative disc disease cervical and lumbar,plus my spine is fused from birth in the centre. The pain is chronic,I use a stick and wear a neck collar to take pressure of my spine,but not all day thankfully,I'm married my husband works,I have had to retire fairly youngish from work about 9 years ago,the pain is now severe in my left leg and knee,parts of my skin are numb on arm and right leg. I get really depressed that no one can see how difficult it is for me and dont see my disability,I am still expected to carry on doing everything I used to,although my family know my diagnosis,its pain 24/7 and sleeping is difficult I have pain everywere in my body,but still cheerful,it isnt going to change so i refuse to let it rule who i am personality wise. The other issue is never getting visits or messages from friends anymore and being at home all day with no company or anyone to go and do anything with,i never thought life could get so lonely,any suggestions? 

deb74

Hi Snowflake56. I don't have degenerative disc disorder but I have go cervical spondylosis. spina bifida. scoliosis, oesteo arthritis, Me, hyrochephalus and joy of joys I have just been diagnosed with fibromyalgia and a degenerative heart condition and I am only 45. I keep myself busy with my craft work which I sell in a local craft shop, Like you I have had to give up work but that means I only work when I am up to it. I don't get lonely as I have a dog and she is brilliant company! Good on you for not letting it change you. If we are miserable and give in to these things then they have won!

pollyanna1052

Hi Snowflake, being cut off from people can be distressing. Thats where support groups like this are so helpful.
xxx

Snowflake56

Thankyou for the replies,I am new at this so tell me if I'm doing anything wrong.Im so glad I found the courage to come on this site,I know I'm not alone but I am also a good listener,I know there are others just as bad or sadly sometimes in a worse position than myself.Feeling cut off from society is an awful feeling,I keep myself as busy as possible but it's so lovely to have company sometimes or even a message,or to be on this site too,but sadly for myself my friends have all but disappeared and fail to keep in touch,I dont want sympathy just to be treated the same way before my problems.There is nothing in my area to get involved with so tend to read books,a little arts and crafts and fashion.Im a very bubbly person and would love to hear what others do that occupies their time.

Adrian_Scope

Hi @Snowflake56. I’m really glad you found us. You’re very welcome here.
Do you mind if I ask what you’re doing for pain relief at the moment?

Snowflake56

Hi Adrian,I wear pain relief patches that have to be changed every so many days,they take the edge off the pain,I also take naproxen,i also had some acupuncture at the hospital but it didn't do anything really.The pain radiates through my whole body,with the nerves being trapped,an op was ruled out the consultant thought it too dangerous to operate so close to the spinal cord.The pain radiates from the back of my head which causes quite nasty headaches too.

Chloe_Scope

Hi @Snowflake56, how has your pain been this week?

Snowflake56

Hi Chloe,thank you for asking about my pain,its increased this week,but not sure if the sudden change in cooler weather plays a part. Its affected me also because of not being able to get comfortable or sleep which made me feel slightly depressed and tearful. 

Chloe_Scope

Hi @Snowflake56, I'm sorry about that! I know my pain levels can very much be associated with the colder weather and rain. I imagine a lack of sleep won't help at all! Were you able to get some rest this weekend?

Snowflake56

Hi CHLOE_SCOPE,Yes I managed to sleep over the weekend,recently moved house which is stressful,the pain clinic at the hospital told me to avoid stress,it will increase my pain levels,easier said than done sometimes though 😊. Thankyou for asking it's kind of you. Hope so many others have also had a good weekend health wise,hope yours was a good one too.

Chloe_Scope

I had a lovely weekend thank you! I'm glad you were able to rest - and I can imagine moving house is very stressful. I hope you are getting there slowly and please do let us know if we can do anything to help.

ozzy19721968

Hi guys I have been diagnosed with spinal stenosis two bones have fused together like snow flake was told that an operation was not available due to to it been so narrow and close to my spinal cord and have arthritis in my joints shoulder back and knees cant lay down to sleep as the pain is unbearable and when I walk or stand the pain in my legs and knees is so bad I have to sit down cant stand straight as back hurts been on morphine patches and antidepressants for 3 months now  I am only 47 have other conditions angina diabetes neuropathy in both my legs and feet high blood pressure bad circulation in both legs .I have been told to apply for pip 

Snowflake56

Hi Ozzy,I was also 47 when my symptoms started with degenerative disc disease,it was a shock to go from being healthy to being in so much pain,I have numbness in legs and arms and arthritis in knees and joints. It is difficult to sit,stand and sleeping is very hard and especially trying to turn over in bed.Like yourself I have some other ongoing illnesses too, so I applied for pip because my working career came to an abrupt end,I would prefer to be healthy and back in work but pip has helped very much. I was dreading the meeting with the person who came to my home to do the checks,but it was clear i was suffering with my disability and the hospital etc proved this about my condition.There are advocates that will help with support at your meeting,please apply if you have been advised to do so.

ozzy19721968

Thanks snowflake had my assessment today think it went ok  but can never tell until I get a letter from dwp my working life is about to come to an end to I must admit I am not looking forward to not working .but dont think I can put up with the consent pain .I swear some people think I am putting it on if only they understood how much pain I am in at times said I would gladly swap places of a few hrs with them so the get to know how much pain we are all in so they can understand what I am going through 

Rockfan39

Hi my partner has degenerative spinal desease and also lost all the feeling down one side of his leg, an operation was ruled out as to dangerous, he now needs a wheelchair, my question is he has been told by the pain medication team at the hospital that he most come off all his morphine and oramorph, they will reduce in 12mg every 2 weeks. They have said the pain is all in his head and that once he is opiate free the pain will be less, they are not offering any other pain relief. He takes nuproxen and gaberpentin as well and has been told to take paracetamol if he snuggles with pain. Anyone else going through this. He is really struggling to stay positive as he knows the pain will increase and he will left to suffer in silence 

Snowflake56

Hi rockfan,it is not in his head at all,I speak from first hand experience of sheer uncontrollable pain,that to me is utter nonsense.My g.p wants me to reduce my naproxen because it can cause stomach issues,but would not dream of taking me off my pain patches,I think maybe a complaint needs to be made ,this type of pain is unbearable and caused me to feel very depressed.I really empathise with your partner and hope he receives the pain relief he deserves.

Snowflake56

Ozzy19721968 I'm glad your assessment went ok let's hope you get your pip sorted as soon as possible now. It's an invisible disability and yes those who dont suffer with it have no inclination how it affects your mobility and the unbearable pain it causes,just dont feel you have to prove your illness to anyone,but concentrate on your health,the pain clinic tell me stress will increase the pain oweing to tense muscles,so try to ignore any negativity towards your illness. Good luck 

ozzy19721968

I would definitely not stop taking the patches I would be in tears all the time  .i have had arthritis in my shoulders for years and when they do the test to see if any weakness is there they said I should have had operation years ago I said I was told that because I was young that they would not do anything until I am in my late 50s .I asked the question if I had been refferred to a surgeon at the point wear I was suffering weakness would my muscle wastage have not happened soon tracked back on him self .same as I was told to loose weight a few yrs ago as they wouldnt operate on me said to loose 2 stone in 3 months I went to the gym every day and I lost 2 and a half stone went to the next appointment and they said to loose one more stone back to the gym lost 2 stone went back again and then they tried to tell me to loose more I asked for the senior doctor who I see the first time as I have lost over the weight they have asked and still tried to get me to do more the junior doctor come back and said we will put you on for emergency op and I wish I kept the weight on as since loosing the weight I have had more problems than i ever did with the weight on sorry for the rant but they have got to understand that we only take pain relief because we have to not because we want to i would do what snowflake said and complain 

chiarieds

@Snowflake56 How lovely to read part of your earlier post, '.... still cheerful,it isn't going to change so i refuse to let it rule who i am personality wise.' I applaud your mentality, whilst appreciating the enormous problems you're facing.

My problems are different to yours, but I'm in pain within a couple of minutes of being upright, which lasts all day. Perhaps people don't see your disability as you hide it as far as your pain goes; I think many who are in so much pain often do. Can you let the friend(s) that mattered to you most understand this? Explain to them that you are still the same person, but the pain you are in limits what you can do. Altho' my family understand my problems, I feel it may be helpful to have someone else to talk (rant) to.

I've only been here a short while, but I think you've joined a great group. You are certainly not alone, & with the quality of being a good listener, seems like you will also continue to help others, thank you. All that we can do is share our personal experiences, hoping to help others within this community.

Delighted to see you read; this is my main distraction; also music, relaxation, visualizations, etc. Often easier said than done when you're in a lot of pain. I used to teach relaxation classes, but when you wake up in pain, which continues all day, how the condiment do you 'relax?' I think sometimes a combination of 'distractions' may help.