Endless Back Stories. Support For Back Pain and Sciatica. Thread 8.

[MatildaTheCat]

Sadly there seems to continue to be a need for this thread as many of us continue to suffer from back related pain. There are many causes, the pain and misery is shared here and hopefully some comfort derived from knowing we are not alone. We are strictly non competetive and newcomers most welcome.

We can offer advice on medication and effective drug combining plus other methods of pain management.We have used different treatment options from hydrotherapy and physio to surgery. We can share our experiences of navigating the big and baffling medical world, both private and NHS as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits. . We are not doctors just people who have trodden the painful path of obtaining a diagnosis and dealing with our conditions.

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

If you have advice, need advice, need a hand to hold, want to do some shopping another skill obtained along the way , then come in. We are friendly. We talk a lot. Come in, have a and say hello

Our Last Thread

Cauda Equina Syndrome. A must read for severe acute pain with Red Flags. Please Read

Constructive Rest. A Simple Exercise Anyone Can Do

Yes it seems any kind of back pain can be subject to the "its in your head" approach - mainly (imo) because they don't know what to do with most of us. Yes surgery stopped the worst of the nerve pain but I had no idea I could only expect a 80% return to normal (on a good day) and would have pain in various degrees every day for the rest of my life. Funny how that one slipped their mind eh? Given my time again I'd do more research so make sure you do that no matter what they come up with. Still better than before though as they keep pointing out (I've stopped listening lol)

hello all, some will remember me, been away for a bit from mumsnet- just got busy doing my university course which has really stepped up a gesrfor the second year.
Labrador mum , so feel for you- have had some similarities in bad spd in both my pg's and hips are deffo a problem, but they didnt really get to the bottom of it as they did a look see op, tidied up a labral tear and declared my hip "in great condition" and discharged me when i was still taking all the pills every day.
I would try pregabln as the pain sounds very nervey in nature- as others say, can take amitrytiline same time, I take 20 now and 300mg pregablin in 2 doses-am and pm, i was told 2 doses is optimum for how it's processed in the body.
I would advise anyone getting pain in all quadrants of the body to try to get a rheumy appt refferral to see if it is fibromyalgia or other centralised pain sensitisation syndrome as it might alter the deatil of how you treat/manage it.
I got fibro dx couple months ago and it has made me focus on doing things that control my stress more since that is a big factor in how badly one is feeling (they think?) - I have an appt to discuss drugs on 30, I would like to try tramadol as codeine makes me quite constipated and my mum has taken tramadol for years, but recently stopped after getting a new hip- and I think your mum's biochemistry is often v similar to your own. Obvs everyone is a bit different but its worth a try and the slow release one might be better to stay on top of the pain- if i dont keep on it it can get away from me quite quickly.
I have started meditation and I think I'm getting the hang of it slowly. I am a bit behind on the exercise habits- I need to get back into a regular thing, theres no room in my house so i go to the uni gym, which is fine but its just finding time and energy. I am becoming more an more subject to insomnia ufortuantely- it is something I am trying to fight but I never had problems falling asleep when i was a chef as i was soooo tired all the time.
I have read there is a link believed between fibromyalgia and autism (my son has autism) but they are not sure about it or why, as yet.
I have been told i'll get cbt and physio, but I am a bit concerned about the stuff I have read about graded exercise and PACE trials, the recent study that lead to the quite awful article in that papr about exercise and positive thinking being able to cure those with CFS/ME and by association fibro- as apparently they have very similar mechanisms, involve mitochondrial dysfunction and have big symtom overlaps.
I have started getting pain from noises sometimes- boy, thats quite a weird one! sorry to make an essay post, hope you are all sleeping soundly at this time and pain is low. like you labrador I would dearly like a third child, they are the best thing i have ever done, but dh recently changed his attitude completely and said i shouldnt if it causes this pain- but there is no surety it did cause it or just happeneed at the same time, and though I amworried I feel I am in pain anyway i may as well do what make sme most joyous- buthe also said he didnt want to have to deal with 3 as i am, that i cannot help as much as before, so thats a sore subject at the mo and we havent spoken of it since we had a massive allmighty fight about it.

I did some yoga today, but now i'm wired, why am i always tired to the max at 8, waiting for kids to sleep and then awake again at 12! and 1, still at 2, just feel so awake. ho well only 2 essays , data gathering and 3 weeks left to goand i get a xmas break!

Skully can you ask for a pain management referral?

I've not been here for a while and have a new username now, but had some great advice here a few months ago for my sciatica, especially on pain relief. Thank you to all those who helped!

I think I may finally be coming out the other side . Still taking gabapentin but as of 2 days ago nothing else! Not speaking too soon, as I've had one or two good patches but then set backs, but hoping to be med free by the new year if possible.

Hope it lasts for you formerly :)

Oh, FK, I'm racking my brains as to who you are. Glad you are emerging out the other side.

Thank you Matilda I don't think I would have been as keen on the nerve meds if I hadn't read the thread. But they really were a godsend. Opioids really were ineffective and then I found out some people don't metabolise codeine properly which explained a lot! Last couple of days a bit niggly so back to the odd anadin extra for me. But I think it's mostly muscle tightness. Has anyone else found their leg muscles tighten terribly with sciatica and any thoughts on how to ease them off? My hamstring is like a piece of rope

hellooooooo!!!

Helloooo

I have very tight hamstrings too, FK. I would love some advise too! I have to be careful to only stretch out my hamstrings and not pull on my lower back, as I imagine we all do.

people! sorry have no advice though .. am currently having painful tendonitis which has not responded to treatment so starting again ... twas a nice change from back pain at first but fed up noo

Does ultrasound help with tendonitis Ally? I have a nova sonic from years ago (which seem to have gone out of use nowadays) but when I asked if it should be helpful for back pain, the physio at the back clinic said no but its useful for ? I think she either said tendon or ligament injuries. Are you getting any help with it? I get tendons and ligaments mixed up but I still struggle with a wrist injury from over a year ago.
I have a couple of stretches I do to stretch my ham strings- that I have been taught to do. The thing seems to be to hold them for greater than a minute - which seems ages then without releasing it try and stretch a little more. For me the trick is to find a pose that protects my back - and I suspect we might all be a bit different as to what is best for us.

No Maggs it didn't help .. neither did the deep massage, the acupuncture nor any of the exercises. Have had more extensive x-rays done now by ortho consultant and appt with different physio next week then podiatrist for new orthotics the following week. If that doesn't work I will be banging my head off the wall as its getting to me now 5 months on .. fingers crossed I might see a break from the pain by January ... ish ... . My arthritic neck still hurts most days along with my hands ... not to even mention my back which fortunately is not too bad. Up at 4am today due to pain grrrr. Sorry ... pity party done oops!

Okay I'm back with my coccyx injury from last July. I went to the dr a few months ago who said nothing could be done, if I had broken it it would be healed by now and he thought it would be muscle/tissue damage that was causing pain. He gave me ibuprofen and that was that.

It went away again of course but it's back with a vengeance these past few weeks but I was jumping around at a concert, had intense keep fit classes and sat on hard seats at school concerts so I know that won't have helped. I'm persevering with the pills and deep heat but it's getting me down. Every time I feel I need a BM it hurts and during it hurts and now even I feel like I'm not finished even though I am! It niggles when I'm lying and walking too just a dull ache

I'm thinking of making an appointment with a chiropractor as in now getting worried even though I know what's caused it please someone tell me this is normal for this kind of injury?

Maggs you are a genius! for you. Saw the new physio last night and woke up pain-free (leg-wise) for the first time in 5 months. And what was the exercise that made the difference I hear you ask? The same stretch but hooooold for 30 secs ... bingo! I am going to start holding all my stretches for longer and see what effect that gets. One happy bunny here!

sorry hotpat .. can't help but I feel sure this can be helped so fingers crossed for chiropracter!

Ive just been exercising as well. My therapist gets me doing all sorts which is Pilates based and geared to my back. It feels tough at the time. Then I tend to feel quite good for a while (?endorphines) and the next day is the one to watch for. Hoping to orrow will be good.

Now lying on my hottie trying to find the energy to get up and move.

Hope you feel OK tomorrow Matilda- I agree its the next day to watch for. Ally I will admit to joining an over 50s pilates class (actually I think it was originally over 60s but they kindly allowed a few younger people in - not that I am that much younger-and left off the age restriction) but Its very gentle with lots of slow stretches after each little exercise and I think it suits me well. I hope the stretches help. I used to climb so we have a chinning bar at home - although I only gently half hang from it- but its good for upper stretches.
Hotpatoo hope the chiropractor helps. I go monthly now ( used to go more- little and gentle) and for me it has been helpful. I certainly go through better and worse patches.

Just checking in to this brilliant community which has really helped me over the past six months (I hope the OP appreciates how much impact she still has on the world even though she can't do paid work any more ).

So...here's the gen on thoracic outlet syndrome as experienced by me:

• Lots of GP's know very little about it (mine just panicked because it's bilateral)
• MRIs and CTs aren't that useful because they don't show the problems caused by movement and don't often show the fibrous bands that may be present
• the test for the vascular symptoms that's more appropriate is a duplex dynamic subclavian ultrasound. For me, this was hard to get because our community hospital doesn't do it so I had to get the neurologist to refer me to BigCity hospital instead. This is ironic because the ultrasound is obviously cheaper than MRI....

-What's made a massive difference to me is deep tissue palpation from a skilled osteopath. She says that damaged stringy soft tissue doesn't spring back away from the nerves/arteries the way healthy tissue does and gets "tethered" (adhesions?) -physio exercises were useless/damaging to me -a decent musculoskeletal clinician advised Alexander technique rather than specific physio exercises.

• all the horror stories on line involve a general or vascular surgeon being allowed to operate and the patient then experiencing worse nerve problems because what they needed was a neurosurgeon...:{ my neurologist said the idea person to operate on TOS would be someone who could confidently do a hand transplant.

Am 80% better - typing again - the last 20% may be hard.... oh and it's been not too great combining it with running a small business :{

MissTriggs, thank you. I can honestly say that's one of the nicest things said to me this year. It is hard to retain a self of self worth when neither working nor child rearing. If this thread has helped others that's a big bonus. It's helped me, too, so not entirely altruistic .

I loved the comment about a surgeon who can do a hand transplant being one to aim for. I was chatting to a surgeon who works with pain patients a couple of days ago and she was commenting on the shockingly low ability of many surgeons, which combined with their very high egos can be a massive risk. To all those considering surgery, wait, ask a thousand questions and ask for second opinions. Not saying all surgery is wrong, of course but spinal surgery is risky and often not very effective. This leads to further spinal surgeries which are, guess what, less effective and carry more complications.

How is everyone? Busy and tiring time of year for almost everyone, though I seem to have cleared my diary a bit too efficiently this week and feeling a bit bored. No doubt on Thursday evening I will remember a long list of items I meant to do this week and we will be wearing dirty clothes over Christmas and trying to find gifts for the forgotten ones at the local petrol station.

Back wise, I feel stable recently. Not good, not awful. Is it due to my Pacing and endless pain management? Maybe a bit. Or am I just used to the pain and ignoring it? Also, probably a bit of this, too. Oddly, I don't really like it when people say I seem a bit better. It makes me feel as if I must look like a fraud for resting and letting others help me all the time. It's confusing really because I know my friends mean well and want me to be better.

So I hope all fellow back sufferers are doing well. Delegate, rest, forget the floors and drink wine when all else fails.

Yes ditto what Misstriggs said .. you have brought us all together Matilda and we are all very grateful to you.

I have quite a lot on this year which is unusual for me so hope I get through it all in one piece.

Backwise I am not too bad as my sore leg has taken all my thoughts lately (and its still much better). No doubt that gorilla will sieze its chance lol. I wonder if all the painkillers I was taking actually helped keep my back at bay?

So agree with the "big ego, low ability" of surgeons. I was lucky as I did no homework at all.

Merry Christmas and all round!

Just an update I went back to the doctor today who examined me this time, it turns out to the bit just above my coccyx and it is all swollen, this is where I feel most discomfort on sitting.

He is now referring me to a specialist and mentioned injections? He was also going to find out if I'd need an X-ray but doesn't think they will give one

I just wondered if anyone else had had anything like this and what will happen? I'm obviously a bit worried now which is silly as I know what's caused it but my mind runs away with itself!

Matilda - I'm another who is thankful of the support and collaborative wisdom that these threads provide.

I've dipped in and out over the last couple of years under a couple of names.

Does anyone know about Pregabalin? My GP prescribed it today. Starting off with two weeks of 2 x 25g dose and then up to 2 x 50g. The only thing is that the boxes came without a leaflet. I usually read every word. Instead, I have googled but that is scaring me.

So, has anyone had a positive experience of Pregabalin. Please - cheer me up.

My pain is from DDD, caused by Scoliosis. I had an upper fusion 25 years ago, but this, along with a large lower curve has caused DDD and horrible, debilitating pain.

Danson I don't take Pregabalin but lots of others do so I'm sure you will get some advice soon

Thanks Allypally. First day of the holidays and dh's alarm went off at 6.30am.

Still. He brought me warm pan au chocolate and coffee in bed so all's well.