Ideas for helping pains

johnnyk32uk
johnnyk32uk Member Posts: 41
edited 22. May 2019, 04:45 in Living with Arthritis archive
Hi,

I am new to this forum so sorry if this has been said before and I will continue to look at older posts for tips and ideas.

I am recently off my PA meds due to me starting new meds for migraines, and I am not taking (or have been told to stop taking) pain killers as they make my headaches worse. I have recently been refused biological treatment but I complained and there is now an investigation into this (but I am not that hopeful) so for now I am not on anything for my PA aches and pains and they are getting quite bad. I was basically on pain killers alone for about a year after I stopped apremilast.

I have a heat pad for my back which helps for so long, hot baths seem to help a bit but again not for that long. My feet are sore so have a foot spa and again does so much. I have tried gloves for arthritis but didn't help.

I was just wondering if anyone has tips/ideas on how to reduce pain without taking pain killers?

Cheers,
«1

Comments

  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Sorry to hear that you're suffering. I wonder whether you have had a referral to an Occupational Therapist (OT)? When I first was diagnosed with RA the specialist rheumatology OT gave me lots of suggestions of ways to altar tasks and activities to protect joints. Subsequently as things have altered/deteriorated I have rung up and had further appointments when I've been given a variety of splints and supports for specific joints such as my thumbs and wrists.
    Similarly I was referred to Orthotics who gave me bespoke orthotics and an ankle support to deal with foot pain and ankle pain. It may be worth asking your rheumy for a referral if not?


    Some people find heating a joint helps, others prefer icepacks. There are a range of topical sprays and creams that can offer temporary pain relief, your local pharmacist may have suggestions.

    I'm sure there will be other folks along with suggestions.


    Deb
  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi johnnyk32uk

    Managing long-term pain is a major aspect of living with arthritis and finding something that works for you is a constant battle.

    You might try asking to be referred to a Pain Clinic as this can help you work through different things that may be of help.

    Our website also has a good section on “Managing your pain” and it’s worth taking a look here if you haven’t already done so:

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Hope you manage to get your medication sorted out. Do let us know how you get on.

    Best wishes.
    Brynmor
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    dibdab wrote:
    Sorry to hear that you're suffering. I wonder whether you have had a referral to an Occupational Therapist (OT)? When I first was diagnosed with RA the specialist rheumatology OT gave me lots of suggestions of ways to altar tasks and activities to protect joints. Subsequently as things have altered/deteriorated I have rung up and had further appointments when I've been given a variety of splints and supports for specific joints such as my thumbs and wrists.
    Similarly I was referred to Orthotics who gave me bespoke orthotics and an ankle support to deal with foot pain and ankle pain. It may be worth asking your rheumy for a referral if not?


    Some people find heating a joint helps, others prefer icepacks. There are a range of topical sprays and creams that can offer temporary pain relief, your local pharmacist may have suggestions.

    I'm sure there will be other folks along with suggestions.


    Deb

    Hi Deb,

    Thanks for your reply.

    I did get referred and seen an Occupational Therapist a few months ago, and they did offer some help, I got a splint for my worst hand/fingers but found this very uncomfortable after even a few minutes. I have also tried other splints but I find it difficult as if they are in the same position for a while they can go numb or I get cramps, I can't seem to find a happy medium. My job as an analyst doesn't help either I suppose!

    I have also seen the foot specialist who gave me insoles but again didn't really help much with the pains I was getting. I know they are trying to help and it is appreaciated even when it doesn't help me.

    Over the years I've had steroid injections in fingers and toes and general ones, and some have helped more than others but they of course wear off over time.

    I find heat better than cold works for me so I have hand warmers, hot water bottles etc when I'm not using my hands and feet. I've not really tries creams or sprays so might look into that thanks.

    Thanks for your suggestions, much appreciated.

    Cheers,
    John
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hi johnnyk32uk

    Managing long-term pain is a major aspect of living with arthritis and finding something that works for you is a constant battle.

    You might try asking to be referred to a Pain Clinic as this can help you work through different things that may be of help.

    Our website also has a good section on “Managing your pain” and it’s worth taking a look here if you haven’t already done so:

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Hope you manage to get your medication sorted out. Do let us know how you get on.

    Best wishes.
    Brynmor

    Hi,

    Thanks for your reply.

    After I was refused biologics I was just referred to pain management, this was before I seen a neurologist and diagnosed with migraines.

    My neurologist told me most pain killers would interfere and make my migraines/headaches worse and I might have to choose between head and body pains. He did say biologics should be fine but I don't know if I will get to try this this or not.

    I will check out the section on managing your pain, thanks.

    Thanks for your help and if there is any updates I'll post them.

    Cheers,
    John
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Pain is a difficult area for all of us. One thing that unites the majority of us is that pain relief doesn't relieve anything of real note. My pain differs according to which branch of the disease is having a tantrum. Today it's the turn of the OA and I suspect it is that one because it is cold and damp, the pain is sharp, stabbing, 'hot' inside the joint and localised to my ankles, knees and hips. Back in the summer it was the PsA, the inflammation from that affects my whole body causing terrific lethargy on top of the usual levels of tiredness and pain.

    Over time we find what works for us, some like heat, some cool, some like pain patches, others tablets in varying strengths and combination but, no matter what we do, it twangs away. For me it's the minimum of cocodamol, rest and distraction. I hurt but so what? Something's been twanging since 1997 and on an increasing level, maybe one day it will level out . . . . .

    You are caught between a rock and a hard place aren't you? What a difficult situation, I am sorry. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    thanks DD,

    Sounds like you are in a lot of pain as well.

    I am also having a sore day where everything seems to be painful at once, the cold certainly makes it worse for me.

    My back has never been as bad as this before and I had an MRI a few months ago as they thought it might be Ankylosing spondylitis, which a lot of the symptoms I have match but they said my inflammatory results ruled this out and this was why I wasn't given the chance of biologics.

    I do try and stay positive as much as I can, I will go back to work next week as I need to get on with it. My work has been good and I can work from home as much as I can, especially like this, I know others can't do the same or get the chance to so I am quite lucky. One good thing coming off the pain killers and taking my migraine meds is that I can think clearly again and now have less headaches!

    I hope you feel a bit better today :)

    Cheers,
    John
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I am always in pain but that's OK, I am used to it and would not know what to do with myself if it suddenly all disappeared. :lol: I also have fibromyalgia which can add another layer by causing sore and tender muscles.

    If your inflammatory markers are low then that shows that your current regimen is working and you won't be offered the expensive stuff. Pain will continue despite that because that is what it does. I am wondering if you might also have some OA, that is always worse in the cold and damp and the meds for an auto-immune do nothing for that.

    Today is not going well with my OA thanks to the weather so I will take two 30/500 cocodamol, I haven't had any for twelve hours so have room to maneouvre before bed time! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    I've never actually thought about having OA, so that is a good shout :)

    I have been referred to see another rheumy consultant but that will take months I assume going by previous appointments but I will mention this when I do see one thanks.

    I was actually told by my old rheumy that biologics were the next step for me and I was only to be sent for a MRI to rule out Ankylosing spondylitis to see what biologics I would then go on. After the MRI I was told I would not be going on any biologics but was being referred to pain management instead. I did say my fingers, wrists, knees, feet and toes all have some swelling and feel hot most of the time, my back from middle to lower is sore most of the time now, and it's sore to breathe especially during the night as it feels like someone is squeezing me really tight, and it's not my wife :D

    There is inflammation there I was told but not enough so makes me wonder why I was told what I was about going on biologics.

    The DMARDs I have tried did work, sulphasalzine helped a lot and I was on this for over a year and tried to persevere but I was like a zombie all the time so I came off them. Leflunomide again helped but different side effects like mood changes and feeling down, and feeling sick all the time. Apremilast only worked for a little bit then stopped and I also had sickness and headache side effects. Methotrexate tabs made me feel sick, but the first injections were good and I could put up with them. I came off them and when I went back on the side effects were not great at all and I sadly couldn't handle them!

    I was getting by on pain killers but couldn't think clearly and made my headaches worse I have now been told, now I can think clearly it's great so I do feel better but after being told one thing then end up not having any meds for my PA I am just a bit angry.

    Sorry for another long story :lol:

    People like yourself and others on here really help and it's also good to get things of your chest when others don't really understand.

    Thanks,
    John
  • jennand
    jennand Member Posts: 121
    edited 30. Nov -1, 00:00
    Hello John. I thought I posted here earlier but I must have forgotten to press a button. Anyway, have you discussed your headaches with your Rh specialist as sometimes arthritis can cause headaches. In fact, it can cause many seemingly unrelated symptoms.
    Maybe a tens machine might help, but I would advise you check this also with your rheumy. Also, some aromatherapy oils could help. All suggestions of course as only trial and error will tell
    Take care.
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Hi there,

    Thanks for your reply.

    I have had migraines/headaches quite bad for 8/9 years now.
    I always mentioned them to my GP and Rheumy and was just told it could be the side effects of the meds I was on at the time, they never suggested it could be liked to my arthritis but that is something else I can bring up thanks.

    I will try anything just now and have been thinking about a tens machine :)

    Can I ask if anyone has tried Bowen therapy?
    My in law has been off work for over 6 months with a bad back and after a few sessions of this he is pain free. I am not saying it will help everone but was just wondering if anyone has heard or tried this?

    Thanks again,

    Cheers,
    John
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    A bad back is not necessarily arthritis, is it? Treatments can overlap conditions but when an arthritis is caused by an over-active immune system that is the thing that needs tackling. Osteopathy, reflexology, acupuncture, physiotherapy,, yaddaa yadda do nothing about that.

    I suggested the possibility of OA because your symptoms on that front sound very like mine, especially with heat providing relief, but that is something for your GP to determine. I have been taking injected meth and humira for eight years, the lovely blood results show that they are being effective but that is not the same as being 'cured'. Our lives are further complicated when we start overlapping hospital departments, in my arthritic years I've 'done' orthopaedics and gastroenterology, toddled in and out of X-ray and lung function tests too. Why did you stop the injected meth if it was working? I apologise if you have already explained this but times are currently challenging me more than is usual. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Hi DD,

    No need to apologise :D

    Yes not all back pains are of course from arthritis, the in law has had back pains for some time and the job he does doesn't help. My GP and rheumy said trying things like acupuncture wouldn't harm things and when I heard about the Bowen treatment I am thinking it can't make me feel worse right, I know it's certainly not a long term or any solution for PA but think I just want some relief from this back pain. ​

    I came off meth as me and my wife tried for another child, she did get pregnant but sadly had a miscarriage. After the PA pains came back I tried to go back to where I left off with the meth but sadly it didn't work out and the side effects were too bad for me to continue. I think I can put up with a lot of things and like most I have but over long periods of feeling the same way I just can't.​

    I'm sure I'm not alone with things such as tastes changing, going off certain foods, not eating properly, I used to like a drink now and again and I still do but hardly ever these days it's just the way I feel now.

    I don't know how long it will take me to see a consultant but I will go see my GP and mention OA, many thanks for bringing this up.

    Cheers,
    John
  • stickywicket
    stickywicket Member Posts: 26,101
    edited 30. Nov -1, 00:00
    I've not heard of this and have long since given up on treatments not provided by the NHS as I've concluded there's a good reason why not. I appreciate you're in a tough situation re conflicting meds but I think your best bet is to try to get hold of your rheumatology helpline. And / or try some physio. It helped when I had a bad back last year.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    I've not heard of this and have long since given up on treatments not provided by the NHS as I've concluded there's a good reason why not. I appreciate you're in a tough situation re conflicting meds but I think your best bet is to try to get hold of your rheumatology helpline. And / or try some physio. It helped when I had a bad back last year.

    Hi,

    Thanks for the reply.

    I was referred to a physio and seen one a few months ago while I was waiting to see my rheumy. I was told by the physio my symptoms were related to arthritis and him doing physio on it probably wouldn't help. He gave me light exercises for my hip pains but said my back issues he could not really help.

    I think regarding other treatments I am just clutching at straws and would try anything but I know these won't help long term or perhaps even short term and it's not like I have the money to waste!

    I am still waiting to hear if I am going to get new treatment or not as I complained against their first decision to refuse me biologics, I should hear back in the next week or so. I will see what the outcome of that is then take things from there.

    Cheers,
    John
  • Joel
    Joel Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi,

    I am new to this forum so sorry if this has been said before and I will continue to look at older posts for tips and ideas.

    I am recently off my PA meds due to me starting new meds for migraines, and I am not taking (or have been told to stop taking) pain killers as they make my headaches worse. I have recently been refused biological treatment but I complained and there is now an investigation into this (but I am not that hopeful) so for now I am not on anything for my PA aches and pains and they are getting quite bad. I was basically on pain killers alone for about a year after I stopped apremilast.

    I have a heat pad for my back which helps for so long, hot baths seem to help a bit but again not for that long. My feet are sore so have a foot spa and again does so much. I have tried gloves for arthritis but didn't help.

    I was just wondering if anyone has tips/ideas on how to reduce pain without taking pain killers?

    Cheers,

    Hi I saw your post on the say hello board and as you said there are certainly a lot of similarities between our situations.

    I get a lot of pain in my feet and this is mainly (i don't know if this is usual or not) along the base of my foot, feels almost like its in the tendons.

    As I said in my "hello" post i did nothing about my arthritis for years other than painkillers and the odd course of naproxen here and there, like you i generally tried to adapt and live my way round it until recently when it has began to seriously affect my quality of life and pushed to be referred to a Rheumy.

    I found that i suffer a large amount of lower back pain and got told by a physio that this was more than likely due to my posture as I spent most days limping or adjusting my weight due to the pains in my feet.
    Its only a small thing and it didn't stop the pain but one thing i did do was get a really good non slip bath mat and when i have my shower in the morning (i know this is going to sound ridiculous but..) Shower with the plug in. As the bath fills up the slow warming seems to help free up my foot joints and tendons a bit more than just a "quick" shower.

    I will say like a bath the effect isn't long lasting but some days just those little things here and there can make the difference between and good and bad one.
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    but some days just those little things here and there can make the difference between and good and bad one.
    Absolutely, and it's such an important point to make - but one that many new to the situation struggle with.
    Being able to get downstairs in one go without gritting teeth is good - be blowed to "before, I could run down...." Before is a time that's gone. Little things can be incremental, so better to notice and appreciate the positive ones and try and ignore the negative - ie enjoy the short term relief rather than anticipate the return of pain. Hard, and not always possible, being human, but worth it.
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Joel wrote:

    Hi I saw your post on the say hello board and as you said there are certainly a lot of similarities between our situations.

    I get a lot of pain in my feet and this is mainly (i don't know if this is usual or not) along the base of my foot, feels almost like its in the tendons.

    As I said in my "hello" post i did nothing about my arthritis for years other than painkillers and the odd course of naproxen here and there, like you i generally tried to adapt and live my way round it until recently when it has began to seriously affect my quality of life and pushed to be referred to a Rheumy.

    I found that i suffer a large amount of lower back pain and got told by a physio that this was more than likely due to my posture as I spent most days limping or adjusting my weight due to the pains in my feet.
    Its only a small thing and it didn't stop the pain but one thing i did do was get a really good non slip bath mat and when i have my shower in the morning (i know this is going to sound ridiculous but..) Shower with the plug in. As the bath fills up the slow warming seems to help free up my foot joints and tendons a bit more than just a "quick" shower.

    I will say like a bath the effect isn't long lasting but some days just those little things here and there can make the difference between and good and bad one.
    [/quote]

    Hi there,

    Thanks for this and I agree the little things go a long way.

    I will try that in the shower good idea, as I don't always have time for a bath. Yes my right foot is worse and it's right on the base and makes it so painful to walk on most of the time and I do limp about as well. I also agree that things like this are probably making other things worse, like back pain from my posture etc.
    I try and do exercises/stretches every day just to keep things from getting worse but I sometimes get very tired afterwards, most of the time it's OK but some days it can hit you worse!

    I hope you see a rheumy soon and get some help that you need.

    cheers,
    John
  • YogaJones
    YogaJones Member Posts: 18
    edited 30. Nov -1, 00:00
    Hello!

    I'm not sure if it would help for PA but I find for OA that exercise (especially yoga) really helps. I experience the least pain afterwards (and you get to have a 5 minute nap at the end too.

    Yoga x
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    YogaJones wrote:
    Hello!

    I'm not sure if it would help for PA but I find for OA that exercise (especially yoga) really helps. I experience the least pain afterwards (and you get to have a 5 minute nap at the end too.

    Yoga x

    Hi Yoga,

    I have looked into exercises like yoga, tai chi, and swimming although if my psoriasis is bad I feel very insecure about going swimming! My wife does callanetics and says this helps her relax, although some of the things she does I certainly couldn't.

    Thanks for the suggestion and I will look into that today :)

    Cheers,
    John
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    The soles of both my feet are hurting so I am concentrating on stretching my Achilles tendons. The PsA is in all my toes, both ankles and both hips have OA, my knees have both so life is currently far harder than usual: my feet are hurting because I am not walking enough or properly, it's a viscious circle. I'm off to push the vacuum around, focusing on posture and will later go for a walk around the block, no sticks. I will take the Spouse in case I fall (wet leaves are more dangerous than ice) and things will hurt more in some places but my soles should be easier. Fun, innit? :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Hi,

    I hope you were OK out walking DD :)

    I got my letter back from the hospital today basically saying I am not getting to try biologics and apart from one index finger I am OK!
    Since January I have been telling them about all my issues, I've said this to all the nurses, therapists, physios, and this is all that is mentioned in the letter. The recommendation is still pain management even though I told them about starting my migraine meds and pain killers making these worse!

    I can go to the ombudsman to take this further but I doubt this would be overturned.

    I will go see my GP next month (takes at least 3 weeks to see my own GP these days) and maybe mention OA which has been mentioned on here and most symptoms seem to match mine.

    Oh well at least my migraines are getting better :D

    Cheers,
  • Tanne
    Tanne Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi Johnnyk
    Over the last 30yrs I've tried various treatments, including the Alexander and Bowen techniques. I have scoliosis on top of everything else and I can honestly say the the chiropractor was the best help for me. Having had the usual NHS help I paid privately for most of my treatments and the chiropractor was worth every penny. It unfortunate that since I have nerve damage around my lumbar & thoracic areas and so can no longer have treatment as manipulation could cause more damage to the muscles and nerves in spasm.
    For me the difference between the Bowen and chiropractor was that Bowen was very gentle and to my mind a bit like a more hands on version of physio, which has never been of any help with me.
    Like others have advised heat is a fantastic help, I'm currently sat with an electric heat pad on my lower back :D. My g.p. prescribes diclofenic gel which I use and get some relief with, even for a few hours. I've also had capsicum cream before but felt no benefit from it at all. I have a wrt floor shower and shower chair so when the weather as it is today, cold and damp, I will spend time just sitting in the shower for a while. And whole it's not practical to jump for a bath two or three times a day when your working; having a long soak firsrvthung to get the heat into your bones and then using the diclofenic gel through out the day helps me cope.
    I hope you find something to easy your suffering and wish you well.
    Tanne x
  • barbara12
    barbara12 Member Posts: 21,008
    edited 30. Nov -1, 00:00
    Hello John
    Its so hard to keep on top of pain, like the others have said we say pain dullers, not killers..wish they were..
    I find that distraction is a big help, has well has the pain meds..anything to take us away form concentration on the pain ..
    Hope you get some relief soon..
    Love
    Barbara
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Thanks Tanne for advice on the bowen treatment, I am not sure if these will help so might not try them just now but I am just getting fed up as i've not been this bad for a long time.

    I do feel a bath in the morning helps and I also have a heat pad on a lot of the time for my back just now.

    The last week my feet have also became very sore and difficult to walk on, I'm hobling around like an old man which probably doesn't help other areas like my back and hips. I have a foot spa but it only lasts so long to help with the pain.

    Pain dullers is better I agree Barbara, I am not really taking anything just now as I am on migraine meds and the pain dullers I was on made them worse! I have been referred back to a Rheumatologist but that will probably be months away and after the issues I've had with the hospital I don't know what will happen next.

    I have been off work for nearly 4 months now and when I went off I thought by Christmas I would be headache free and on new meds for my PsA. My headaches are better so that's one good thing! Just my Ps and PsA are now worse.

    I plan to go back to work this Wednesday as I can't stay off forever. My work (the NHS) have been great and the job I do means I can work form home a lot. I just need to watch what I am doing and ease myself back in gently, then it will the holidays :)

    Thanks to you both for your replies.

    Cheers,
    John
  • Comeish
    Comeish Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi Johnny
    I live in Scotland too, where about do you live? I have osteoarthritis in my knee
    Caroline
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