Hi everyone...just wanted to share/vent and seek advice from anyone who might have the almost/same diagnosis as self....currently off sick from work as, cannot sleep, sit or even walk about without severe pain....was supposed to have had a pain management appointment with anaethetist at local hospital which i have waited months for and was cancelled last week...so depressed and tablet meds just not numbing pain away...have spoken to G.P. who has said he will try and intervene re the cancelled appointment and getting another quickly as have now received appt.letter for november. Asked if i went privately what the cost would be and informed around a thousand pounds...which i don't have...
Any advice please...
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Bea61
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That's a lot to manage for you and it's wretched that your long-awaited pain management appt. has been postponed because I know from here that a decent pain clinic can make enormous differences to people's quality of life. I hope that your GP's intervention is successful.
In the interim, has a physiotherapist given you a routine to keep your joints as mobile a practical and to prevent any worsening of the scoliosis? I was born with a scoliosis and know how important it is to keep mobile and prevent it from worsening and having an impact elsewhere. Plus, a couple of years ago I developed psoriatic arthritis with inflammatory osteoarthritis and this affects my hands and joints as well as back/neck.
I know how much you must want to get back to work because it can be such a good distractor from all of this!
I'll put some pain websites in another link because it might be worth your time to browse through them.
Hi many thanks for your speedy response...i've had many physio sessions over the years and to be honest haven't improved mobility or lifestyle...following the mild stroke i am left with loss of muscle on my right thigh which has worsened the right knee joint which i had 'fixed' four years ago and was referred in Feb for another appt. with Consultant for review. After 4 months got this review appt and MRI and was told he could't fix my knee now as MRI revealed marked scolosis which I never knew i had Although i had been complaining for years about the pain in lower back and it locks so bad, can't move etc. Anyway thats when i was re-referred to another consultant for pain management ...and to have his nerve block appt cancelled on me i have been without any treatment since Feb...the NHS is in fact crumbling more and more and if you have private healthcare you are privileged...but i have worked for nearly 45 years and now am in such a state i feel my work life is over but i don't want to finish work...I agree work is distracting but the role i have is computer led and although i have Access to work support and a good chair at work, i can no longer sit and have suggested a raised work desk in order to operate computer but then i can't stand for long either..am so frustrated with my body - am normally a sociable person but at the minute just an emotional wreck...Thanks for reading... Happy Saturday !
I too have severe and widespread OA + scoliosis and have had severe pain for most of the past 20 or more years. There have been brief periods of lesser pain but the general picture hasn't been exactly great. I have had 2 Spinal surgeries and may, or indeed may NOT, have another. I am 10 years older than you but haven't had paid employment since a couple of months before my first op.
I have done it all: pain management programmes, injection in various joints at pain clinic and by rheumatologist. I even fractured a vertebra and was told it was 'just(!)' chronic pain despite my knowing it was a new pain in a new location etc etc.
So you truly have my deepest sympathy, although to say I empathise would be more accurate. I hope you get you treatment quickly and that it works - and works for a decent length of time.
Hi Jenies..thank you for responding..equally i feel your pain and utter frustration on how slow and carefully i do everything - used to be so energetic and walk dogs etc. etc.and now i can only walk a short distance and my right leg seizes up and i get pain in my back and feel breathless with the pain. I too hope my GP has sent urgent referral again to be seen before November....my mood is so low that i don't even want to see friends or, use my car even for a 10 minute drive...feeling sorry for myself today...hope you are having a better day!
Hi Mary - had a much better night thank you - awoke too early for a Sunday but managed to get downstairs (thats progress) and have a coffee and take meds. Went back to bed and awoke 6 hrs later with tingling arm - i hadn't slept on it but notice more and more the tingles in other parts of the body..thinks its the pregablin?? I've had this tingling sensation in hands and they feel frozen for a couple of seconds/a minute....But my lower back and legs feel a bit better today (actually a whole lot better) so will take it easy and see how day progresses...Thank you for your ongoing support!
How do i get the little emoji to add to replies? xx
On my keyboard , second in from the left, bottom row, I have a smiley face. I click on that and it takes me to a choice. I click on the fourth one along for animals.
Are you using your smart phone or a laptop. Perhaps it's different on what you're using.
Sorry but I have only just seen your last reply. I don't seem to always get notifications - don't know why.
If you're having problems with the Pregablin, and the new symptoms in your new post, have you considered trying Amytryptiline ?
Don't know how long you've been on the Pregablin, but I believe if has to be withdrawn gradually. Have you discussed all this with you'd GP again in the last couple days?
Hi! had bad couple of days and not up to reading/responding but better ish today i have been on Pregablin for approx. 10 years...have put on weight nearly 3 stone so am considered obese...such an awful word...have to see the Health Nurse but with the ongoing pain from my chronic conditions, she is not chasing me....
I have wondered whether to request to switch to Amtryptiline..but my regular GP has now gone on a sabbatical ...I did ask him whether i should have been referred to a Scolosis Specialist in June when new diagnosis discovered and he said to wait until i had seen the Pain Management Specialist, which i have done...
I did think about going to A&E last weekend but changed my mind and took extra co-codomol ....this is the drug that is now making me feel sick when i take the regular dose....normally it helps and yes it does make me drowsy but then can sleep a little longer...
Perhaps once i have the nerve block i can get a complete review of all the meds i am taking as feel they are not working effective for me. Hope you are having a good day!
Oh Bea, I have had a hectic day. Am ok now though. Might tell you about it sometime! Right now, winding down with an hour TV and early night.
You have had it tough, haven't you. I have so been there. Put on 5 stone over the years of illness. Still 4 stone overweight but getting around better. The problem is, when we get illnesses and conditions that stop us mobilising then we can't exercise to burn off the calories.
Have you ever have blood tests to check your Thyroid Function? Worth having a look on Thyroid UK sometime at the list of symptoms of Underactive Thyroid - see how many you have.
I was undiagnosed and therefore untreated Hypothyroid for years. Late 2011, I was finally officially diagnosed with -
Hashimoto's Autoimmune Thyroiditis and Hypothyroidism and started on Levothyroxine. Earlier this year after reading on Thyroid forum I asked for blood tests to check levels of Vitamin D, B12, Folate and Ferritin. I am now on VitD and Folic acid tablets for deficiencies !!
Sometimes it's as if we have to diagnose ourselves then ask the doctors to prove it.
Thank you Mary, am not going to be doing much as spasms keep coming and keep stumbling but hope you have a good weekend! Bea x
P.S. I have adult scoliosis - newly diagnosed in June...but truly believe have had it for years as its now termed as 'marked scoliosis' and have been complaining about this lower back pain for years and have been ignored...
The nerve block injection has to be done under general anesthesia (spelt this wrong i know!) and GP advised i have to be off certain medications a few days before i have the planned appointment..risk of bleeding...
Fusion surgery is a last option for me as do think this would be traumatic😩 (yes finally found how to insert emoji's)
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