Hi! Spinal arthritis sufferer

frogmella
frogmella Member Posts: 1,115
edited 25. Nov 2012, 09:19 in Say Hello Archive
Hi,

I have been lurking since around April when I learnt that my symptoms were caused by facet joint arthritis.

I have had spinal problems for about 6 years now. The first time my back went I was (mis)diagnosed with piriformis syndrome. Then, 3 years later, it went again and it was confirmed as a prolapsed disc at L5S1. I had that level fused in October 2009 and had ongoing problems with recurrent infections for nearly two years (I wasn't in enough pain to have a deep infection apparently so my surgeon kept fobbing me off!). Last August though he finally accepted I was ill and in pain so I had the infected hardware taken out.

I had hoped that that would be the end of my back and leg pain! But it didn't go away.

In the end I went to see a new surgeon who did all the tests again (I have had 6 MRIs, 2 CTS and countless X-rays and blood tests over the past 3 years) and was diagnosed with facet joint OA at the next level up L4L5.

I had injections into the joints at the end of May and they have helped a lot but are wearing off now. I am doing a course of PT and am exercising like a possessed woman while I have this window of opportunty!

Anyway, that is my shortened story - I have joined the board because you all seem a nice bunch and I have found a lot of answers from reading your posts.

Thanks for reading!
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Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello frogmella, it's nice to meet you and I am pleased you have joined. I don't much about your type of arthritis so I look forward to learning from you. I have an auto-immune type, psoriatic arthritis and that has led in turn to OA in my knees and ankles. So far my hips and back are fine and I hope things stay that way. As you have been looking in for so long you'll know that we're pretty strong on support and encouragement and I am sure that will come your way too if needed. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,282
    edited 30. Nov -1, 00:00
    Hello from me, too, frogmella. I'm afraid, like DD, I know thankfully little about spinal arthritis but there there are those on here who know far more than they'd wish and I'm sure you'll find everyone welcoming. You've certainly had a bit of a runaround with yours. The injections (if they're steroid ones) do wear off. I think you're right to try to keep all your muscles strong and supporting but don't overdo it :roll: Have you looked at AC's booklet on exercise? It might be of help. I hope to see you around the other forums.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Thanks for the welcome guys! It is nice to have these forums where people "get it". It is a shame we need them though.

    I am trying not to overdo things - I don't do much housework!! I also end up having a sleep most days too!

    I will be around quite a lot I imagine.

    :)
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi from me as well!! :D

    I find housework impossible with my back trouble. I have a collapsed disk at C3 & C7 also L5/S1. So I empathise with your pain. You have certainly been through the mill.

    I hope you get as much support from the forum as I have.
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Thanks for the welcome and the kind thoughts.

    Collapsed cervical discs sounds awful suzygirl. I post on a different "back" forum and the neckies do seem to suffer awfully. I am lucky (ha!) that it is just my lower back I guess!

    Thanks for the good wishes vitaniya. This does seem to be a very welcoming forum.
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    The neck is annoying as it causes dizziness, weak right arm and numb fingers. I think necks do cause misery, but any pain gets you down after a while.

    You sound as if you are no stranger to pain unfortunately. I don't think you realise how much you use a body part until it hurts :lol:

    Hope today is a good day for you :D
  • kentishlady
    kentishlady Member Posts: 807
    edited 30. Nov -1, 00:00
    Hi Everyone. I also osteoarthritis in my back with 3 discs affected and am in almost constant pain. My GP has tried various painkillers for me but they all give me horrible side affects and all I can take for the pain is paracetamol which, of course, are nowhere strong enough. I also use 'supposedly pain-relieving' gel which doesn't really help much either. The pain gets worse the more I move about and although I do go out as much as I can, out of necessity and to save my sanity(!), I have to have frequent sit-downs and plan my visits with as short a walk as possible and by the time I get home am usually in complete agony. The constant pain really gets me down at times as there is so much I want to do but can't. The only relief I get is when I lie flat, although sometimes even that doesn't help. Not much good when there are things to be done and places to do!!! I know a lot of you are experiencing much worse and if anyone has any suggestions for coping with the pain, I should be extremely grateful.
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi Kentishlady, have you asked your gp to refer you to a pain clinic? It is awful when the pain is unrelenting and interferes with your life. For many of us it takes a combination of meds to control the pain.

    Heat, ice and gels can help along with other things. The pain clinic are very good at helping. They have offered me facet joint injections.

    Physio can be useful as well. Speak to your gp again.
  • stickywicket
    stickywicket Member Posts: 26,282
    edited 30. Nov -1, 00:00
    Hello from me, too, kentishlady. I'm sorry about your spinal problems which must be very difficult if you can only take paracetamol. I'm wondering if there's something else you can take. Anti-inflammatories do cause stomach problems and should be taken with a stomach protector, codeine-based painduller can lead to constipation but a change of diet (lots of water, fruit - especially figs - and veg) can help as can laxatives.

    As for outside - do you use any walking aids? Sticks and elbow crutches can help and the right kind of rollator will provide you with a seat to take a rest on from time to time.

    Have you tried a Pain Clinic? I haven't but many on here swear by them.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • kentishlady
    kentishlady Member Posts: 807
    edited 30. Nov -1, 00:00
    Hi, thanks for your replies Suzy Girl and Sticky Wicket. It does help to know that other people also experience the same symptoms. I have tried the pain clinic (eventually, after a lot of pestering to my GP) who said that they would only suggest what she had already done - which was not a lot! I realise it is extremely difficult for anyone who doesn't suffer with OA to fully understand how it affects you, which is the same as with everything in life. Have been to physiotherapy and hydro-therapy. I had various types of physiotherapy which included traction. However, when I saw the pain consultant (he's the only person I've come across who seemed to understand how the pain affects you), and told him he said that I should never have been given that given my problems and the state of my back. Don't know if that has resulted in the problems becoming worse or not. He did increase the strength of one of the pain-relieving gels I use. Suggested a course of injections but also said it was possible that they would not work. I am very reluctant (and nervous) of having injections in my back - but not anywhere else - as should hate to end up with the problem being worse. Did mention it to my GP but she was very non-commital. Don't think there's much I can do. The hydro-therapy helped whilst in the water, but once out of it, back came the pain - no pun intended!!! I have already tried anti-inflammatories without success and can't be doing with their side affects. I also find housework extremely difficult to cope with but just try to do it a little at a time - what doesn't get done one day can wait until the next! Am so glad I came across this Forum as it really does help to share experiences with other sufferers who actually understand what it is like. Best wishes to you all. KL
  • stickywicket
    stickywicket Member Posts: 26,282
    edited 30. Nov -1, 00:00
    Re the injections - one or two on here have had them. I think everyone is afraid of injections in their back. It's just one of those areas.... If you asked on LWA forum, they might see it and tell you of their experiences.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    I am having the injections soon. It is said they help 2 out of 3 people. I don't fancy them and admit to being nervous. However I am desperate and feel I have nothing to lose.

    I would have a think about it.
  • frogmorton
    frogmorton Member Posts: 26,780
    edited 30. Nov -1, 00:00
    Hi Frogmella

    Lovely to meet you :)

    Sorry about your back and that you had to find us, BUT the upside is that you have now because these forums are lovely :D

    I look forward to seeing you posting here and there.

    Love

    Toni xxx
    Love

    Toni xxx
  • frogmorton
    frogmorton Member Posts: 26,780
    edited 30. Nov -1, 00:00
    Hi, thanks for your replies aid it was possible that they would not work. I am very reluctant (and nervous) it a little at a time - what doesn't get done one day can wait until the next! Am so glad I came across this Forum as it really does help to share experiences with other sufferers who actually understand what it is like. Best wishes to you all. KL

    Hi there kentish lady

    Lovely to meet you too :)

    I am so sorry to hear about your back too. I have tried other meds for my back over the years amitriptyline and diazepam both worked to relax the muslces in the area which can spasm as I am sure you know. Gabapentin is another, which didn't do much but was the ONLY medication which didn't affect me negatively at ALL :lol:

    I have also used a tens with some success albeit temporary it did help a bit. Heat as well....relaxes backs in spasm l think.

    I am not sure what your problems are with meds, but tramadol and co-cos can make me sicky and dizzy so i now have pain patches so I dont get that 'boost' of the drug.

    Anti-inflams gave me upset belly and pain so I now take arcoxia which doesn't upset my stomach at all.

    I will keep on thinking of any ideas

    Love

    Toni xxx
    Love

    Toni xxx
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Hi again,

    Sorry, I didn't check this thread for a few days so I didn't see the new messages.

    Kentishlady - your back does sound worse than mine. I have two affected levels, but only one isn't fused. I have had one heck of a fight to get where I am now in terms of getting an understanding surgeon. GPs do seem to think that, as everyone will get facet joint arthritis, it isn't "that bad". Even my superduper understanding one seems to think that with enough exercise and physio I will be better. I think she is right to a point, but I don't believe any amount of exercise will fix my back!

    As far as the pain goes facet joint injections have helped me so that I have had two brilliant months where I could really push my exercise regime and physio etc. I am now in better shape but the injections are wearing off and the pain in my back is coming back.

    I saw my surgeon yesterday and he says I could have another injection in a few months but he would not do more than three. I think, long term, he is looking at fusing that level too. He also said to ease off the exercise a bit too. :( I am trying to lose the weight I piled on over the last year so am reluctant to do that. I have lost about 9 pounds since the end of May, slow going but better than nothing, and I am sure that is mostly down to increased exercise.

    Do you have nerve pain as well as back pain? I have been on amitriptyline for three months and that has helped a lot with nerve pain. It does make me sluggish but I have been sleeping like a log. I am now switching to gabapentin on the physio's advice because I have a lot of muscle twitches in my right calf ( learnt that they are called fasciculations) and cramps in it too. She, and the GP, think that gabapentin will be better for this side of my nerve problems. I just hope they work as well on my pain!

    I found that normal analgesics did nothing for the nerve pain except that if I took them only at night they made me drowsy enough to sleep through it! When my disc went, three years ago, I took tramadol 4 times a day. It never touched the pain but I could time it so that about 2 hours after taking it I could sleep for a couple of hours! I also had valium and took the whole day's supply at night to sleep through! Thing was that the sleep effects wore off after a couple of weeks or so and then they were useless.

    Before the amitriptyline I would take one codeine at bed time just to help me drop off and that worked.

    All these drugs upset my "digestion". I would use senna and lactulose to help. Amitriptyline did a bit too, but if I ate about 10 portions of fruit and veg it was manageable!

    I wrecked my stomach taking ibuprofen so now take omeprazole with my naprosyn. No problems there.

    I think it is worth giving the facet joint injections a go, but try and find out if it is going to be done under x ray guidance. They aren't much use if the injection doesn't go in the right place. My surgeon injects dye first to check.

    I wish you luck.

    Froggy
  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Frogmella,

    I just need to mention that it's never a good idea to take meds other than the way prescribed by your health team. Paracetamol especially can be very bad taken as one mega dose.

    I know you aren't doing this currently but it is important to mention this for all our forum users. If pain meds aren't working sufficiently well do go back to your GP, there are many different meds and combinations of meds you can try.

    Take care
    Moderator
    YEH
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Hi Moderator,

    Sorry, I should have said that I checked with my pharmacist friend about the valium before I did it. They were only 1mg tablets and I had been prescribed 5mg three times a day previously so I knew they were ok. I also told the GP what I was doing too.

    I am always really careful with paracetamol - I know the dangers with them. That is why I have my codeine separate and not as cocodamol so that I can titrate my dose as needed.

    Sorry again, I will be more clear in future.
  • kentishlady
    kentishlady Member Posts: 807
    edited 30. Nov -1, 00:00
    Hi, thanks for your replies. I have problems with side effects from painkillers my GP has tried me with. Have tried most of the ones you have suggested, the majority of which leave me feeling like a zombie! Have got an appointment booked for later this month to see my GP so will ask her about Gabapentin and whether she thinks it might be worth me trying that. I also can't take anti-inflammatories nor codeine which does, of course, rule out some of the other options. Have decided that I just HAVE to get GP to sort out problem - she just says we've tried some - but know there are many different ones and think we need to keep trying until we find one that is suitable for me, as a) don't like taking paracetamol on such a long term basis (although I always keep to prescribed dose), and b) it is not strong enough to make any difference to the pain level. Maybe I need to go back to pain clinic again and keep pestering until I get a solution? If at first you don't succeed ..... best wishes to you all. KL
  • kentishlady
    kentishlady Member Posts: 807
    edited 30. Nov -1, 00:00
    Hi Frogmella, Just re-read your message. Yes, I do get nerve pain, sciatica. When it is very bad, I get pain down my leg and my foot goes numb. When that happens I know I have to be extremely careful and try and have an easy day. I have suffered with back problems for many, many years, have had couple of slipped discs, bulging discs and a trapped sciatic nerve which resulted in a fall (backwards down the stairs - from about the 5th stair up), so it's not really surprising that I now have OA which, according to the x-rays have had, show that the problem is in the same area where have had the past problems. I know everyone recommends exercise and that's why I do try and go out as much as I can, but if you have a mobility problem, that is sometimes easier said than done! However, I don't intend to give up, although sometimes it is hard to remain positive as I am sure you well know. Thanks for your message. KL
  • frogmorton
    frogmorton Member Posts: 26,780
    edited 30. Nov -1, 00:00
    Hi, thanks for your replies. I have problems with side effects from painkillers my GP has tried me with. Have tried most of the ones you have suggested, the majority of which leave me feeling like a zombie! Have got an appointment booked for later this month to see my GP so will ask her about Gabapentin and whether she thinks it might be worth me trying that. I also can' Maybe I need to go back to pain clinic again and keep pestering until I get a solution? If at first you don't succeed ..... best wishes to you all. KL

    That's right KL

    If at first you don't succeed :) You WILL get there trial and error. There are others which have a similar effect to gabapentin (pregablin is one) if that doesn't help. I think docs sometimes get into the habit of prescribing the 'obvious' meds and when they don't work or agree with us, don't always think outside of the box so as to speak. I am lucky my GP has an interest in arthritis.

    Pain clinic docs really should be better able to help being specialists it pain. Some folks on here really swear by the help they get from there.

    You take care

    Love

    Toni xx
    Love

    Toni xxx
  • kentishlady
    kentishlady Member Posts: 807
    edited 30. Nov -1, 00:00
    Hi Frogmorton. Thanks for suggestion. Will suggest that one to my GP too. Think you are probably right when you say that GP's have a few 'standard' favourites they prescribe. Guess it comes down to the fact that you might see 3 different medical professionals and each of them might make a different suggestion. I get the feeling that my GP is not overly interested in arthritis suffering nor appreciates exactly what it is like. That is true of most things in life, until you experience it yourself, you can only sympathise with others. Think that's one of the advantages of this forum that you others know exactly how you fee. Am sure there must be something somewhere that would suit me and help me more. Hope you are having as good a day as possible. Kentish Lady (Beryl)
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Kentish lady, I couldn't manage without my gabapentin. I have nerve pain and numbness down both legs due to disk problems. I always know when I have missed a dose!

    My GP was really good with pain relief. I had tried all the usual pain meds, and I had my sons footie tournament that weekend. Sometimes I get obstinate and refuse to miss out on important events for my boys. He understood this and prescribed MST. It is a slow release morphine, which bizarrely is better long term for you (verified by gp and pain doc ). I still need other pain meds, due to a variety of conditions. It has made things slightly more comfortable for me.

    I advise perseverance with your gp, there are loads of pain patches etc about. Its awful you should suffer so much.

    I wish you well for your appt.
  • kentishlady
    kentishlady Member Posts: 807
    edited 30. Nov -1, 00:00
    Hi Suzy Girl. Thanks for your message. I have tried a couple of pain patches but had to give up with them as find it too hard to cope with the side effects plus the OA pain as well! Am having a bad day with sciatica and numb foot today as well so not doing very much! Like lots of others on this forum, I find housework extremely difficult and it causes the pain level to escalate. Have got a few different meds to suggest to my GP and will see what happens. Will let you know how I get on. Hope you are having as good a day as possible. KL (Beryl)
  • frogmorton
    frogmorton Member Posts: 26,780
    edited 30. Nov -1, 00:00
    Thanks for asking after us Beryl

    Doing ok today.....you just pace yourself as far as housework is concerned.... good luck at the docs and please let us know how you get on.

    Love

    Toni xxx
    Love

    Toni xxx
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Hi again KL,

    I have had to learn to wear fairly substantial blinkers as far as the housework goes. My husband is "in charge" but seems to have different vision to me, lol! Seriously though, my new surgeon has said NO hoovering, No gardening amd No loading/unloading the dishwasher. I know it is hard, I get really frustrated with the state of the house but have learnt to hide my eyes behind the pages of a good book!

    I really hope you can get some decent pain relief soon.

    suzygirl - when my disc went and I was climbing the walls with pain and had maxed out on tramadol to no effect I did beg the doc for something better for the pain but she wouldn't budge. Said that anything stronger side effects too bad etc etc. I was off work sick and could barely do anything so wouldn't have made any difference to me! I suppose, to be fair, my pain isn't as bad as that at the moment, but I had sort of thought my codeine was as good as it gets and that doesn't really do anything so I had given up taking it! I wonder if my stoic nature hid the amount of pain I was really in or if my doc just thought I was as well to carry on like I was? How long did it take for your gabapentin to kick in btw? I have been on the three tabs a day since sat changing from ami from last thurs and I have noticed a big increase in nerve pain. Sitting in the car yesterday was awful and my feet have been aching again. How long do i need to give it before bothering the doc to change the dose? Also, did it give you a headache or I wonder if it is ami withdrawal? My forehead actually hurts to touch. I don't usually have headaches, that is my pain free area lol!

    Hope you all have a low pain day and can enjoy yourselves.

    Froggy