Has anyone out there got PD, Spinal Stenosis ... - Pain Concern

Pain Concern

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Has anyone out there got PD, Spinal Stenosis and Scoliosis. I would like to be in contact with persons having these three conditions .

la40 profile image
la40
17 Replies

I have all of these conditions and would be glad to talk to someone with these.

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la40 profile image
la40
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17 Replies

My partner does. We use this account together. Feel free to dm

Bendytoy profile image
Bendytoy

I have spinal stenosis and scoliosis I don't know what pd stands for but I would happy to talk

la40 profile image
la40 in reply to Bendytoy

PD is Parkinsons Disease which I have as well as the other two. Had a consult with specialist yesterday but she was a Parkinsons specialist and not interested in the other two, just advised me to go to doctor and get some physio arranged, I do physio every day by myself but will get copies of x rays and MRI scans and check out the local physios see if this will help. Having Parkinsons doesn't help. Hope you get yourself sorted out but from what I have gathered over time pain management is the only option except surgery.

Bendytoy profile image
Bendytoy in reply to la40

I'm sorry for being so ignorant. I've had an op 11yrs ago it was great then it came back and then the scoliosis came as well I went to the pain clinic but everything prescribed I had a reaction to so they signed me off so I just use crutches and Tramadol but you'll know there's not a lot u can do I wish u luck in ur future

Marnyguy profile image
Marnyguy

Hi, I’m new here and would really appreciate someone talking to me about spinal stenosis. I got told by my GP that I have a prolapsed disc in my back and spinal stenosis confirmed by an MRI scan. I’m 33 and I’ve been in pain with it for a while now. I’ve noticed that just walking my kids to school puts me in a lot of pain and feel almost numbing pains in my left leg. Sometimes it feels like my leg almost stops while walking and I almost stumble. I’ve looked for help online into what I do next. I work at a place where I have to stand for 8 hours a day with some areas involving heavy lifting and twisting. Can I still do my job? Can I claim for disability, a lot of places online say I can. I really don’t know what to do. Any help in understanding the next steps would be greatly appreciated. Cheers guys

Gigi71 profile image
Gigi71 in reply to Marnyguy

Ask to be referred to a Pain Management team, they have many treatments to help you live your life at a more tolerable level. X

la40 profile image
la40 in reply to Marnyguy

As Gigi 71 says Pain management is an option unless they operate if that is an option, but operations aren't always successful. It seems that you just have to learn to live with it as Doctors don't have answers. Check out if you can get a disability allowance, have a word with Citizens advice, hope they can help. x

I don’t know what PD is but have the other two. Just replied to Marnyguy’s post about spinal stenosis but unable to copy it to you.

la40 profile image
la40 in reply to

PD is Parkinsons Disease which I have been diagnosed with. Doesn't help with spinal problems.

Gigi71 profile image
Gigi71

Does PD stand for Parkinson’s Disease. X

la40 profile image
la40 in reply to Gigi71

Yes diagnosed with Parkinsons in April.

Gigi71 profile image
Gigi71

I’m sorry to hear that, PD brings it own set of problems, I hope you are getting good medical help for it. I have the latter two but not PD, I have RD rheumatoid disease, so also not straight forward. I have many meds for this including a bio med. For my back problems I take Gabapentin and waiting for an op, this will mainly help with the stenosis. I also am under the Pain Management team, have exercises tailored for me, the pain physio also has RD so understands. I also go to chair yoga, we have a lady in the class who has PD and she finds this helpful, she also goes Swimming. I have too use a rolater to get about, so hopefully the op will mean I don’t have to. All the best to you.x

la40 profile image
la40

I use a rolater too. Do chair yoga off You Tube also do exercises that Bob and Brad show on You Tube. Live in Spain but out of a town, I have bad neuropathy in feet and legs and just been prescribed Gabapentin to try and get a few hours sleep at night hope it works. Good luck with the op hope you have it done soon. Keep in touch and tell me how op goes. xx

Gigi71 profile image
Gigi71

Gabapentin is a life saver for me, the pain from the stenosis and where the collar of the vertebrae of L5 has fallen onto L4,I was in tears most mornings. I have been taking 1200mg for some time now, lower doses didn’t work for me. You have to start on a low dose for your body to adapt. It’s definitely helped the leg and feet pain, so fingers crossed for you. I also use heat patches on the right side of my lower back and gel, the gel especially helps at night. You may not need them in Spain. I did still use them through our summer. My partners sister in law had just been dx with PD in June, she is on medication and reduced her hours at work, apart from shaking hands she is looking well now. Thanks for your kind wishes. I do wish you well and will keep in touch. X

la40 profile image
la40 in reply to Gigi71

Thanks for your reply, I use a microwavable bran bag for heat to my back.It's nice to be able to contact people that understand neuropathy in feet and legs it's hard for people to understand how much this restricts walking and doing simple things, you look ok so nothing can be wrong. Hope your partners sister in law continues to be well. How long before your op? x

Gigi71 profile image
Gigi71

We seem to be doing much the same as each other, having RD for 34 years my family are used to me having so many problems with mobility and all joys this disease brings. Having said that I have a positive outlook on life, but my back problems have stopped me doing so much in the last two years and seems unfair on my partner, who is fit enough to still want to do so much more, luckily we don’t live together, both having our own homes. I went to my youngest sons for lunch today, this evening my eldest grandson came for dinner, he 23, we cooked together. Just have to do things differently. I have been waiting for 7 months for this op, the NHS here is so stretched. I have the top neurosurgeon of the region as my consultant. Already had the pre med, plus an echocardiogram and a thyroid blood test, I have an autoimmune thyroid condition too. Age is somewhat against me, starting to feel this op won’t happen. My brother in law has just been dx with stenosis and put on Pegabalin, where you given the option of this med as much more expensive. He was taken ill on the flight to Spain last year and received excellent treatment in hospital in Spain. How do you find your treatment there. X

la40 profile image
la40

Sorry about delay in reply. Been to see my specialist for PD and she has given me an extra tablet to take for PD its called Azilect and first few days made me feel wobbly and peculiar but now its settled and it's OK. I have been trying to make her understand my neuropathy in my feet and legs, I think she thought I was putting it on but she decided to humour me and did some tests on feet and legs, did the knee and ankle bash and after a few tries no response decided to believe me, wants me to have another blood test and has given me Gabapentin to try and get some sleep.

Have to go back in February. Never been offered Pegabalin but they are more interested in PD than the back problems, most probably my age doesn't help as I am 79, I think I am lucky to have good treatment, the hospital in Elche is very good.

Hope you do get your op, think you are great with your positive outlook. I have good days and a few bad days as regards to being upbeat, I have a smashing husband who has the patience of Job, we do most things together shopping, cooking and laundry and we are lucky to have a weekly cleaner who does the basic cleaning.

My daughter lives in UK and we Skype a few times a week and she comes here.

xx