Now what?

Last night I woke up in the early hours in agony, cramping in my left ankle, and today all down my left side spasms and shooting pain from left side of my back, every time I move my left leg i cant help shouting out. Background info. couple of weeks ago caught a cold which set off asthma, treated with usual inhalers. I have lung condition and on 24 hours oxygen hence keeping an eye on peak flow, which has been falling all week. GP put me back on oral steroids for 5 days. Then this. I'm allergic aspirin/ibuprofen type pain relief, which doesn't leave me many options, and when my lungs are struggling it's important to drop or at least reduce meds like codeine, oramorph and matrifen patches, and this leaves me with amitriptyline and duloxetine, which is pretty tough going generally, and just when I was starting to congratulate myself at how well I was doing too!

Any ideas/suggestions much appreciated! Tulip xx

30 Replies

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  • Hi Tulips123

    I am so sorry to read that you are feeling so poorly at this times, and I genuinely hope that you can find some resolution and relief to these issues. It can be really difficult trying to find appropriate and adequate pain relief when you are taking steroids, I know from personal experience.

    I am also allergic to aspirin and ibuprofen, and now my neurologist wants me to reduce my codeine intake. However, he has prescribed me Pregabalin which could also help cut down on my pain levels. I do not know if you have tried Pregabalin? If not, it may be worth discussing this with your GP? If you have, there are alternatives such as Gabapentin?

    I want to genuinely and sincerely wish you all the very best of luck, and I hope that you start to feel better soon. So please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thank you Ken. You are always well informed with your personal experience, and your kindness. The meds you mention, I found horrendous side-effects, but I have heard they can be very good, so I do wish you every success. Tulip xx

  • I think you should call your GP as soon as you can. Have you considered that it might be sciatica? Sitting for long periods could cause muscles to cramp over the nerve. Maybe it is muscle spasms. But not being a doctor, it's not my position to do more than posit questions.

  • Always feel free to give suggestions, you never know what can be really helpful. Someone suggested magnesium, which I remember now has been an issue before. Bananas, strawberries etc. much nicer than pills anyway! Thank you. :) Tulip xx

  • Hi, Sorry you are having a rough time. Any chance the cutback in pain meds has caused any "withdrawal" symptoms? Do you use a muscle relaxant as needed? Just a couple of thoughts. Hope you feel better soon.

  • It's all so complex isn't it? You could be right to some degree, in which case only time will tell. Thank you for your input. It all helps. :) Tulip xx

  • I should have mentioned the fact that I get severe muscle spasms if I suddenly cut back on my pain meds. There are times, like you have experienced, when I need to temporarily cut back and need to do so quickly. Yes, it's complicated. You know this all too well. ;)

  • Keep smiling, :) xx

  • Now that is interesting Chad. My GP cut off my Vicodin rather suddenly. Grr. I am going back to my pain specialist soon and see if he will be more empathetic. I don't remember if I had the hip and lower back spasms before that, but I sure did start getting them and especially worse after he did that.

  • My Rheumatologist was telling me about a case where a patient had been in an auto accident and was admitted to the hospital. The GP had come into the hospital and had cut the patient's pain meds, thinking it was best because they had added other meds and the meds, when mixed with the pain meds, would cause added sedation. (Very thoughtful, careful.) Three days later, family called the Rheumatologist , out of desperation, because the patient was crippled with massive and severe spasms. No amount of muscle relaxant would help. The Rheumatologist visited the hospital and reviewed the chart, seeing the rapid reduction of pain meds. The Rheumatologist contacted the GP and suggested an increase in pain meds, as she had suspected the spasms were a part of pain med withdrawal. The GP agreed to a trial dose of increased pain meds. The spasms quickly released and the patient was much more comfortable. Just an anecdotal account. Yet, one which made an impression upon me. It may or may not be relevant, yet maybe worth consideration. :)

    Hope you find relief soon. :) Chad

  • Hi Tulips, so sorry that you have been hit again. Have you tried a pain relief gell such as volterol or phorpain. I ended up covering the whole of my right thigh last night with Volterol but it did bring relief.

    Hugs sue

  • Hi Sue Voltarol has something in common with aspirin & nurofen which I'm allergic to. I glad you had some benefits anyway! Take care Tulip :) xx

  • Hi, I read this and thought you may have trapped a nerve possibly? If so it will settle on its own maybe Boots will have something you can take? Good luck not funny!

  • Thank you, i'm ok. The responses I've had have been really helpful.

    :) Tulip xx

  • Oh hun I think you should go straight to drs, but I what I always find helps is 10 mins of cold followed byb10 mins of heat it doesn't take the pain away but it does take the the edge of it quite a bit .

    Take care

    Sending hugs xx

  • Hi, didn't think of that, thank you. My shower will come in useful, better than piggin pills any day of the week! Tulip xx

  • Lots of great suggestions and inquiries. :)

    Sounds quite serious with the recent additional difficulties. I hope you will contact your doctor soon. :) KT_Rose

  • Thank you. My GP and I are the best of friends :) trust her completely, if only they could all be like her! Tulip xx

  • That's good news! :)

    If everyone could be so lucky! :)

  • Hi Tulips 123,

    Do be Careful with gels, creams and sprays. Read the lables before purchase or use as many of them do contain ibruprofen style ingredients. Asthmatics should really avoid ibruprofen type painkillers. To be honest, when things are really bad, I do reach for for neurofen and find I can tolerate naproxen if I'm not having an attack.

    Are you allowed things like Tramadol? It may be worth discussing with your GP. As much as paracetamol doesn't help much, perhaps combining it with something else like codeine may help. I'm assuming you've just come off Prednisolone or something similar. If so, you may be in some pain because of it. I had similar side effects when I've had to take it for really bad bronchitis or upper respiratory chest infections that I've struggled to shake off. If it's that, I find it passes in a few days. Make sure you stay warm, lots of warm drinks and lots of rest.

    Hope this is helpful.

    Wishing you the very best.

  • Hi Reykua. Tramadol is in the same family as codeine & oramorph etc. which are all a problem with lung conditions. Still on prednisolone, gp coming again Tuesday. I'm sure you can relate, steroids lift your mood, helps with RA as well, so i'm coping really well! :) I'll worry about Tuesday when it gets here. In the meantime, I've just been reminded magnesium-cramp, so will be topping up with bananas etc. Steroids make me hungry, which is not good, but I do love fruit of all kinds so that will something to look forward to!

    Thank you so much for your kind words. I wish you well too! :) Tulip xx

  • Dear Tulip,

    - I am feeling your pain with you. It must be awful for you. I have had such shooting pain at night and it seems that Magnesium tackles that. I do hope you find relief soon! In my experience acupressure helps a lot to reduce need for pain meds. Best wishes!

  • Magnesium! I knew there was something to do with nutrition, couldn't remember what it was so thanks for that. :) Tulip xx

  • I am so sorry to read your post and that you are in so much pain. I know it is difficult when you have other health problems finding meds that will help that does not have bad interactions with your existing problems. As Reykua says your GP may be able to try Tramadol as I know my friend who has COPD can take that.

    Please let us know how you get on with everything.x

  • I do have these pain killers except when my lungs aren't playing up. I think if I could live on steroids the world would be a lovely place but of course its never that easy. I'm coping. Just. I dont have COPD, and from what I've seen I'm very glad about that! It's called Alveolar Hypoventilation (what a mouthful!), which is a rare condition for which I'm the wrong gender and the wrong age! I'm 24/7 oxygen and then usually it's fine until I catch a cold or something similar, wakes asthma up and away we go again! :) Whoever was in charge of dolling out health problems when I was up had a warped sense of humour :).

    So for now, as suggested I'm going with the magnesium-bananas & strawberries for this cramp problem. I can think of worse treatments and i love my fruit!

    Thank you for your input Rosewine, it all helps. :) Tulip xx

  • I had never heard of this particular illness. Yes I always say that I managed to inherit all the health problems from both sides of my family. Yes I can imagine that catching any kind of respiratory infection must be very bad. My friend with COPD can catch something like the common cold but in her it flies straight to the chest and as you say off she goes with a full blown chest infection. She says the same about steroids as it makes her feel so much better within just a few doses and restores her appetite, etc but of course there is then the down when you come off them. I only had to go on them once and I could not believe the difference they made. The magnesium, bananas and strawberries sound a much more inspiring source of help. Well perhaps not for me as I am highly allergic to strawberries unfortunately which strangely enough helped to bring on asthma attacks with me as a child. Like the thought of masses of bananas though I often have one with my dinner, yummy.

    I don't know whether it is something you are aware of but you can get a Magnesium oil spray and that might be useful to spray on your legs at night as well as supposedly the skin readily absorbs it. I don't know whether you can get in the bath but of course good old Epsom salts a favourite of alot of us for help with aching muscles is loaded with magnesium.

    Do hope something works for you.x

  • I think the spray could be an interesting option, I've never heard of it. They took the bath away a few years ago but I do love my shower. Usually someone helps, but I can still go and sit under it whenever I feel like it. I'm fighting to retain some independence, I'm only 53 and i'm not ready to hand everything over to somebody else to make decisions for me; when/what to eat, when to shower, when to get up/go to bed (have a hospital type bed with remote control :) ) and I am so lucky to have the very best GP in town and she supports me all the way!

    Umm, not sure where that came from, perhaps I just needed to say it. It is something that worries me at times. It's all about moving forward without thinking too much about tomorrows' problems 'til tomorrow gets here. Take care Rosewine, you always 'talk sense' as my mother used to say :) Tulip xx

  • Thank you about the talking sense apart from the brain fog moments when it is more "you know that thing that sort of does that" as I said the other day my husband and I often have bad days together and we could be talking a foreign language.

    Yes I can absolutely understand where you are coming from as I think we are all frightened of losing our independence. Even though I have a OH who could help me with a lot of things I still try to struggle through and do things for myself which is foolish sometimes but gives me a sense of achievement even though if I do a task myself it might take ten times longer.

    Pity about the bath but I use the shower as hot as i can take it in the mornings to get the old muscles working. I will private message you with the name of the Magnesium spray I use as I get mixed up with what we can or can't say about these things. Definately worth a try.x

  • I understand completely. I know at times when my daughters are itching for me to get out of the way. We are who we are. Bit cheesy, but true nonetheless.

    Keep up the good work and many thanks re. spray. G'night :) xx

  • Hi hun I tend to put frozen peas ( it doesn't have to be peas lol) then a hot water bottle I hope it eases it for you xxc

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