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Degenerative disc disease and fibromyalgia

Jul 03, 2016 8:47 AM

Hi all, this is my first post I Live in Liverpool Uk just wondered if there is anyone on here that has been to a pain clinic in the Uk if so How was it? What happens there? Waiting a reply thanks in advance xx

Jul 03, 2016 12:22 PM

You'll find lots of us from the UK, there are quite a few threads going on now about pain clinic experiences, and there are lots of people on here with Fibro and DDD...Welcome. 😊

Jul 03, 2016 12:29 PM

Hi Macey,

I am in the UK and my pain team is really really great! But there are many that are not so good, (i am in hampshire in the south). I think its important to go with an open mind.

My NHS pain team consists of a consultant aneathatist specialising in chronic pain & cancer pain. His physition in pain, a nurse specialised in chronic pain.... and a physio, OT & psychologist/psychiatrist too.

At first it seems a bit daunting but i have been going 10yrs plus... they are available to me always without further need for referral... and i am teaching my GP how to cope with chronic pain... as she as to prescribe whatever the consultant requess her to do so! She is always wanting me to keep her informed from my end. I am lucky.

It will give u access to lots of information, they have 6week courses with support groups and physio, nurse & OT all present here. And the psychological side was very good... so embrace the oppertunity and i really hope u can get some support Macey ❤

Jul 03, 2016 1:41 PM

Thank you very much To you both for the replys I think I will be fine when the appointment come through as I've been waiting a while since my Neurologist asked my GP to refer me. Hopefully I can get a grip on things as I feel like I have lost my freedom to just get up and do what I want to do and go where I feel like. I have been out of work for around 1 year and hate being at home with nothing to do. Are you both still working? Is there a light at the end of the tunnel? Sorry for all the questions. Macey 🙂

Jul 03, 2016 5:35 PM

Good luck macey and never apologise for asķng questions, always happy to try and help 🤗

Jul 03, 2016 5:48 PM

Thank you Lulabel, so glad I found this app just spent a while reading all the Topics cheers.😊

Jul 03, 2016 7:35 PM

I haven't worked for 4 years unfortunately, I have Spinal Cord injuries at C3/4-6/7 incomplete(some use of my arms but no grip or no finger flexion, but diaphragm is partially paralysed so have reduced lung capacity) T7/8 complete which means I am totally paralysed from armpit level, pre injury, I already had severe spine conditions(I was born with congenital spinal stenosis of the entire spine) so had had bouts of time off work throughout my working life,started working at 14(part time) went full time as a chef at 16 then had my accident at 32, 4 years ago.😊

Jul 04, 2016 1:44 AM

Oh bloody hell, sorry to hear your story JAHMAC. Do you find this app helpful? I'm not really sure what it means but c5/c6 I have ddd c6/c7 a broad based disc bulge causing impingement on c7 nerve root, they said I don't need surgery yet but not to rule it out for the future. I find it so hard not working as I have always had at least 1 job along with raising our 3 children. I am 35 years old and want to get back to work asap.My husband works all the hours he can as I'm still in the process of claiming PIP, I have been told I'm not entitled so at the appeal stage at the min. I just wondered how you coped at the beginning? 😃

Jul 04, 2016 2:33 AM

It means that at the levels in my neck)Cervical section) my spinal cord was not fully severed(incomplete injury) so I have little bits of use, well, sort of use. And from T7/8(Thoracic section of my back) my spinal cord was totally severed (complete injury) so at that point I am totally paralyzed from my chest down but because of the neck section C3/4-5/6 and C6/7 it means that from my armpits down I have no sensation. Very limited use of my arms and lung capacity is reduced because my diaphragm is partially paralyzed too.

Jul 04, 2016 2:35 AM

I'll get to the rest of you question in a little while 😊

Jul 04, 2016 2:35 AM

Really sorry to hear that, Do you have a lot of support at home?

Jul 04, 2016 2:37 AM

24 hour carers I'm CHC funded(continuing healthcare- paid for by the NHS)

Jul 04, 2016 2:43 AM

Good that you get all the help you need. What do you do to keep busy? I try to read alot but I find the memory/confusion/ fog makes this quite hard for me. I only use a stick at the miniut but the doctor mentioned a roller as I feel like I need to lean or hold on to something. Sorry again for all the questions just find it hard to live like this when I have been so busy before.

Jul 04, 2016 3:01 AM

It took me 18months to finally get my DLA (now PIP)... i had to appeal.... but my GP ...WHOM I HAD NEVER MET... told the DWP i was fine!... i went and tore him a new asshole in my wheelchair... then he retracted his original statement and it went thru... im not sure how fast everyone elses went thru... but i think its pretty standard in the uk... to have to appeal at least once! They backdate it to the start of the claim tho... its just horrible not knowing... best of luck macey 🤗

Jul 04, 2016 3:16 AM

Thanks for the reply Lulabel mine is only going from Feb 2016 but I had been on SSP 28 weeks prior to that. I have never been out of work before so it's a big ajustment for me. If I don't get accepted on this PUP I'm not sure what I will do, my doctor is lovely and knows what I have been through so I'm hoping that she will explaine in detail how my life has changed. I feel my husband has a lot on his shoulders as we have 3 children to provide for, I am so down knowing I can't provide for them. Also not knowing what I'm going to be like day to day affects me. My husband has mentioned a wheelchair to me as he thinks it makes sense to have one for when we go out for the day but I want to stay as mobile as poss but it does cause me to be in a lot of pain and very fatigued afterwards. Hopefully I will get to grips with my situation soon and realise not to overdo things.Thanks again for taking the time to reply.🙂

Jul 04, 2016 3:29 AM

My husband got my wheelchair from the dump for a fiver... thank gawd romance isnt dead! Lol!

Its not an NHS one... but if u need one, even for 'just incase' they will put u intouch, get ur measurments, & provide one for u. Ur GP will know! I have 4 children... they were very small when i needed a chair... so they all climbed aboard... with a buggy-board at the back for my oldest!

The plus side is... i can only walk inflats... but in my chair... i can wear 'shoe-porn' and make it look good! High shoes that i cant even stand in... look great in my chair! I like to shock tho! ;) good luck sweetie, dont fear the chair!

Jul 04, 2016 3:31 AM

Going my GP tomorrow so might mention it to her thanks.😂

Jul 04, 2016 4:12 AM

With NHS wheelchairs you have to meet very specific criteria, like if you don't need to use a wheelchair all the time and just for outside use-they won't provide you with one. This is a link to My wheelchair services criteria in Bristol. They do vary in each area but this will give you an idea.

https://www.nbt.nhs.uk/sites/default/files/attachments/Bristol%20Centre%20for%20Enablement%20Wheelchair%20Special%20Seating%20Criteria%20Procedural%20Guide.pdf

Jul 04, 2016 4:27 AM

Thanks I will have a look now.

Jul 04, 2016 5:55 AM

Hello I am 19 and suffer with fibro very badly would be great to speak to some people about how they manage their pain im also from the UK

Jul 04, 2016 6:04 AM

I've only just been diagnosed with fibromyalgia last week but I also have DDD and had been back and forwards the Neurologist because they were trying to rule out MS which they now have. So at the minute I only take Pregablin and co-codamol also voltarol gel and deep heat, I'm not convinced that the tablets are doing there job as I am still in constant pain anything I can answer for you I will but think I'm in the same boat as you Hun.😊

Jul 04, 2016 6:25 AM

Fair enough i have been diagnosed since i was 16 i can no longer have co-codamol as paracetamol has done some liver damage so just watch out for that because it can make the pain so much worse i also suffer with depression and anxiety also to do with the fibro and its also already costing me jobs x

Jul 04, 2016 6:30 AM

Thanks for that info was going to speak to my GP tomorrow over my meds, Sorry to hear that you have depression to deal with also. I have felt fine just wanted to know what was up with me know I know I want to get sorted out and hopefully get back into some kind of work. Your employer should be empathetic with your condition. Maybe try and speak to them. Thanks Ihatefibro.

Jul 04, 2016 6:35 AM

Thing is im in the boat where im just looking for employment because i have just left college but no where will give me a job and im just getting sick of it x

Jul 04, 2016 6:36 AM

Oh and dont mention it as i dont want other people going through what i have already been through with it x

Jul 04, 2016 6:37 AM

Oh sorry to hear that, hopefully you can get some help with getting into work, maybe from the job centre.

Jul 04, 2016 6:42 AM

I have just applied for a job as a receptionist so hopefully i will get it but i feel like my 2 years at college were a waste as i took painting and decorating and its really full on x

Jul 05, 2016 4:39 AM

Sorry to hear that, but I think you are on the right line as to work I am thinking about something like that for myself, you could always maybe use what you do in college as a hobby or try and make a bit of money st home involving it take care x

Jul 05, 2016 5:14 AM

Thank u I recon i will use it as a bit of a hobby would be nice to still use the skills i have learnt x

Jul 05, 2016 5:46 AM

Yes and as I said maybe u could make some money from it, maybe Murals if you are arty. People will pay decent money for there kids rooms x

Jul 05, 2016 9:24 AM

Yh that would be brilliant tbh it would be lovely to be able to do that xx

Jul 06, 2016 3:01 PM

Welcome to our community family Mary! I'm from the USA. I've had epidural steroid injx all down my spine for two years (2012-2014). It worked very well until last year when I started having sciatica & headaches again. Hugs & prayers you have good results & a compassionate doc! 🙂💕🙏🌼

Jul 06, 2016 3:02 PM

Macey, not Mary... autocorrect at it again! 😉

Jul 06, 2016 3:03 PM

Thanks FlappysLady81 Xx

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