Newbie - recent spinal fractures

[tangocharlie]

Hi I suffered spinal fractures over 18 months ago but they weren't diagnosed until about 6 months ago by x-rays, I kept being told it was just muscular. The physios and doctors should have realised from the symptoms and excruciating pain. They were partly thrown by a mystery - my DEXA scns 6 years ago, 3 years ago and a few months ago were all fine and no sign of osteopenia or osteoporosis. I'm stuck with kyphosis, a stoop, difficulty walking and on-going pain

People including my rheumatolgist recommended the ROS and it has been a great help, I've read up so much on there, joined as a member, go to the local support groups and most of all the nurse Helpline has been incredibly helpful.

I've just started on Romosozumab (Romo aka Evenity) and so far so good, I think it's even helped a bit with the pain

I'm now looking for tips for life after spinal fractures. The info on the website is great but also looking for practical advice eg can anyone recommend a good rollator/walker? I've got a 3-wheeler which is lightweight and folds easily to go in a car boot but I'd like a 4-wheeler as it would be more stable, but would stil have to be lightweight and foldable. I'll probably put the question on a separate post. Also whether a TENS machine might help with the pain?

[Missus835]

The problem with rollators is no matter what brand, the handle bars are not high enough at their highest setting and I'm only 5 ft. Lost 3 inches with the fractures. My 3 wheeler goes slightly higher and I don't have to lean over it. 3 wheelers do tip though. The perfect height for me are the small shopping carts at the stores. I can walk more upright and actually lean on them if necessary. Not sure about the TENS. Had one which I loaned to a friend and never got back. I will say it didn't do much for lower back when I used it a few years ago. Right now I think I've fractured another one as back muscles are screaming and breathing is difficult, as is eating. Ribs sitting on hips. Ugh.

[tangocharlie in reply to Missus835]

Oh you are having a hard time, you need help, have you just been absndoned? Also did they investigate whether there is some other underlying cause for the fractures like para thyroid problems? eg I'm waiting for myeloma to be ruled out.

I've been to a couple of Disability shops but not found what I want so next step is I'm going to look at some of the links ROS put in the booklet and presumably on the website. Personal recommendations are useful and welcome but I realise we are all different. I am very speedy on a rollator though so thinking about getting an off-roader one that won't get stuck in cobbles and on autumn leaves on paths

[Missus835 in reply to tangocharlie]

GP investigates nothing. She says "you read too much". I think she was surprised by the fibromyalgia diagnosis as she kept saying it's just arthritis. She says the same about PMR flares and was upset when I had upped the Pred a few weeks ago. She wasn't going to give me anymore Pred. Not to mention the Osteo. I had waited 2 years to get into the pain clinic and he diagnosed fibromyalgia and dumped me back in her lap, with nothing more for pain relief. It's a huge runaround. I live in Nova Scotia. I see GP again on Tuesday, as I can't take Gabapentin. Side effects are wicked (for me). I would like to try some kind of pain patches that provide round-the-clock relief. She says opioids are not the answer. Well there is no perfect answer. She doesn't know what it's like to fight through the pain of 3 diseases. Sorry for the rant. I would love an off road walker, as mine gets caught in the ruts. Almost went down a couple of times...almost.

[tangocharlie in reply to Missus835]

That's appalling, I'd change GP. There's no such thing as 'just' anything. How about changing the tack slightly, which is kind of what I did with my rheumie. I said look, I need your help, I'm in a bad way, with this that and the other and don't know where to turn. What else could we try? With one I even said if I was your mother what would you advise me to do next? My GP didn't want to give me pain patches but my rheumie wrote and said could they consider them at their discretion and now they've sent me a message asking if I want to come in and discuss it again. Never give up

[Missus835 in reply to tangocharlie]

Do you find the patches help? ATM I'm taking 2 Tylenol 3 every 5 to 6 hours, which take 2 hours 2 kick in and about 2 hours of taking the edge off. That's paracetamol and codeine. So 60 mg of codeine every 6 hours. With breakthrough pain. Why not give the patches a try? I will change my approach. Thanks for your help TC! 🫂

[tangocharlie in reply to Missus835]

I haven't tried them yet. atm I just take 2 paracetemol once or twice a day if my back is giving me gyp. Sometimes I take co-codemol at night which is a mix of codeine and paracetemol. Both help but I still wake in pain. I might try the patches to see if it gives me a better sleep. You need and deserve help, keep going. I find making a list helps. The one for my back is like a mind map with everything from who I should see, what help is available out there etc etc. Start with what can I do next? Who can I talk to? What are my options. The who what why when where and how that lead to solutions. Keep going! I find bursting into tears even though unplanned gets me help from doctors lol

[MaggieSylvie in reply to tangocharlie]

Pain patches! They gave them to me the last time I was in A & E with my seventh compression fracture. They did nothing to ease the pain. The only thing that helped was opium. That was way back in February, and I am managing now fairly well but I also just wanted to say that I walk with two sticks. It's very inconvenient at times - hospital visiting or any time when I have to carry something, but I can have them at the right height and I can walk nearly as fast as anyone else. I am working on keeping an upright posture but it is hard. Without sticks I am so bent that i'm almost falling over!

[Ketchican in reply to Missus835]

So sorry to hear of the level of your discomfort. Although you live in one of my very favourite places in the world nothing can lessen the quality of life more than pain. I find that when my fractures really pain, which is often, it also makes me feel afraid for the future as I, like many, live alone and in the wee small hours it all seems very black. However, reading this helpline fills me with optimism when I see what everyone is managing and copeing with. Challenge your GP even though it is not easy, she needs a reminder that she is there to fulfill a duty of care to you as her patient and if she cannot/will not then change your Doctor.

Good Luck x

[Missus835 in reply to Ketchican]

Thanks. I waited 2 years to get this GP and would love to switch, but going back on the list for this province is bananas. My daughter and grands still have no family doctor. Ours retired end of 2021. I intend to have "that conversation" with GP on Tuesday. I do live alone and can do many things. Living on the second floor with no lift used to be problematic, but I manage to do the stairs one at a time. No longer can I use my clothesline, so bought an apartment size dryer. I do find the "one day at a time" thing works well. It's difficult to plan events or activities because you really don't know how you're going to be. I have no pain when lying down. Sleep is fine. But I'm not lying down all day. Thanks for your reply. All the best! PS: Nova Scotia is sooo beautiful.

[Meuslialways]

I had a 3 wheel walker for a while but then bought 4 wheel walker . Tens machine never did anything to help my spinal pain.Details as follows:-

4 wheel RHealthcare fold down rellator. Weighs 8.6 kilos with good sized seat, back rest and bag.

Fold down completely for car boot.

Just been to Greece for a holiday and it was great as I could walk further because I could keep having a sit down on the walker. Have to inform the aircraft ahead that you are taking it . They allow you to take it to aircraft door, collapse it and they then put it in hold of aircraft. On landing away or at home they bring it back to door of aircraft.

Hope this helps.

[tangocharlie in reply to Meuslialways]

It does thank you i will look at their website. I can wizz around on a rollator and hope gradually to be able to walk further without it as time goes on, I think it will be very slow progress but things will slowly improve

[johnwalt]

Last I knew I had 9 fractures that started 2-3 years ago, also muscular atrophy (40lb muscle loss and 6 inches in height). I'm over the knife in the back pains but living alone in a basement is hard, thank goodness for Amazon and Walmart online deliveries for food and supplies. I was given a good quality used aluminum rollator that weighs a little under 20lbs/9kilos. At 1st I couldn't lift it into a car (which I don't have) but now I can CAREFULLY. I recommend Melioguide.com I bought her "Living with compression fractures" course when she had 25% off, LOTS of info and I think worth every penny even at full price. I have the rib touching the hip bone too, makes sitting too long uncomfortable. Also 3 grabbing tools placed around for when I drop something. More to say but I've been sitting too long !

[Posy-White]

Hello Tangocharlie

So sorry to read your story, I went 5 months with 8 spinal fractures no one believing the level of pain, etc endless fobbing off. But did get help eventually – pain management was eventually sorted out by Rheumatologist, (managed to faint when I arrived at her clinic as the pain was particularly bad that day!) prescribed Butec patches, transdermal patch Buprenorphine 10 microgram /hour changed once a week. With the pain under better control I started to manage better. Tens machine helped me, the pain didn't go but the worse intense pains became more dissipated, so I could manage car journeys etc.

Tried a walker but even with height loss found them too low, physio suggested gutter crutches (your arm takes your stress as you push yourself upright not your wrists as it does in normal crutches). Also advised to try cold compress / heat pads to see if either helped, cold increased discomfort and heat really helped. So much so I bought heat pads and have them on my bed and chair. I found I managed much better if I rested lying out during the day. I also used Sorbothane inner soles to absorb pavement ‘shock’ when outside walking. In the car used extra cushions especially the ‘shock’ abortion type.

Sorry if I’ve gone into overload with ideas a number I got from peers on this site when I was in great need!

Hope you are able to sort something out that suits you, very best wishes,

Posy White

[tangocharlie in reply to Posy-White]

That's really useful info, thank you. I had nearly a year of being fobbed off with 'it's just muscular' . I am putting in complaints now in the hope that 'lessons will be learned' as sadly what happened to us happens all too often. I was fobbed off again recently when I asked my GP for pain relief patches and offered more co-codemol which didn't want, but my rheumie has written and asked them to reconsider. Am trying to manage without them though as every pain relief med has a side effect of things like bloating and constipation and drowsiness. The most painful time for me is when I wak up and try and get out of bed or sometimes the pain wakes me in the night. It took months of wrangling to get Diazepam for the back spasms but when I did eventually manage to get some it worked really well to get rid of them. I only knew about that because a friend of mine is a GP and she says she prescribes it for back spasms. It's the on-going pain after the fractures have presumably healed that I'm trying to sort out now.

I got a walker which is the right height - the specialist spinal physiotherapist checked it for me. I asked her if I should be using one at all and she said well it's either that or sticks/crutches for the moment anyway and at least with a rollator you can carry stuff on it. When I use it I can wizz around but without it is so hard to balance I walk like I'm treading treacle.

heat eg a hot water bottle or heat pads applied to the lower back really help me too, and I was advised don't wait until its sore, sit with a hot water bottle a few times a day.

Car journeys are very difficult, getting in and out of a car and whenever the car goes over speed bumps or pot holes I yelp in pain, although it's nowhere near as bad as when I first broke the bones when I had to clutch hold of the muscles around the spine to stop the jolting.

How long is it since you got the fractures and would you say pain and mobility are improving at all now? I know every case is different but just like to thnk there is light at the end of the tunnel and I am one of the lucky ones and might see improvement in time

[Posy-White in reply to tangocharlie]

So pleased tangocharlie that you got a walker which is the right height for you, couldn't agree more with your physio crutches are very limiting carrying anything with them is a real art where as walkers have built in bags and even seats! Glad heat helps, sitting now with my heat pad on!

You asked about my fractures,pain level and mobility - I don't know if your a member of ROS and have seen their latest Osteoporosis news? Reason I ask is because there is an artical on Exercises for back pain after spinal fractures - this starts by talking about pain levels with fractures and how the pain usually gets better as the fracture heals over 6 -12 weeks. Goes on to explain how often spinal bones heal in a different shape after a fracture. .....And as this is a permanent change, long term pain can result because of the effects on the surrounding tissues, muscles, ligaments as they try and adapt to the new shape of spine. ...Goes on to suggest helpful exercises, to help, which I was pleased to realize I was doing / doing some towards, their suggestions. I stared with that because we are all so differently effected, so please don't think that because my fractures happened 7 years ago and I still use patches, walk with crutches, wear a brace and use a wheelchair you'll be following me! I do physio daily and once a week hydro I also kept a monthly journal to measure progress and all be it very small steps I am improving in some areas and others I am maintaining on the progress I made. I also think what you can do your starting points seems your are more able than I was after a year. So let's hope that once the pain is under better control you can continue making more physical progress with mobility.

Best Wishes Posy White

[tangocharlie in reply to Posy-White]

Thanks for the reply and the info but so sorry to hear you are still struggling 7 years later as a result of the fractures. My fractures must have healed as it's been about 18 months now but I am still in so much pain so I am trying o find out why and what I can do about it. Unfortunately the first two physios I saw last year totally failed to diagnose my spinal fractures and kept telling me it was muscular and as a result gave me toally wrong exercises and delayed diagnosis. Once I eventually had x-rays which confirmed the fractures, my rheumatologist recommended me to an experienced physiotherapist who specialises in spinal fractures and she has been very helpful. I've just started on Romosozumab and she has told me to be very cautious "wrap yourself in bubblewrap" until that kicks in which should be a few months. I am a member of ROS and I showed her the exercises you mention in the magazine and she showed me how to adapt them to my current state.

[Posy-White in reply to tangocharlie]

Hello again tangocharlie

Glad you have been able to start on medication, sometimes it's the only option and the sooner the better. Some of the exercises I do, also from a physio based within a large spinal team are also very adapted. I do think if you could get better pain management that suits you things will become easier - with managed pain at least one can think and plan!

Not sure if this is helpful but thought of two other things which I've found helpful - first when in the car I have one of my crutches with me (a walking stick would do) I have my arm nearest the door in the crutch, with the stick part pushed again the floor, between the door and my body. This way I can better brace myself against bumps, potholes and speed humps. I also have a car seat belt cushion pad (velcro’s over the seat belt) at shoulder height. Second – I found a magnesium muscle spray (I use one from BetterYou) greatly helps to prevent night cramp being too painful. - Do you get cramps / pins and needles?

Do want to stress I may still have pain but I am even after 7 years still improving, being determined to do and get the best for yourself is a good guild. I hope you are able to find out more about your pain and how best it can be managed.

Best Wishes

Posy White

[tangocharlie in reply to Posy-White]

Thanks for the practical tips. I've done a mind map on a sheet of paper with everything on it that might be able to help me and am working my through it, going for 'marginal gains' as they say iin the sporting world. I think the Romo is really helping somehow, I think it has an analgesic effect as well as building bones. And the back brace is helping too

[SNUGGLEBUGS]

I use a Tens Machine for muscle spasms, due to my fractures, and this helps with this. I also have a special corset I ware when I am doing anything with my upper body muscles, so they don't get so fatigued.

[tangocharlie in reply to SNUGGLEBUGS]

Thank you. The only thing that worked for my muscle spasms was Diazepam but I'm interested n using a TENS machine for the on-going chronic pain after the fractures. does it help you for that? Also do you know the name of the special corset you use? it would be helpful for me to do more research