Hi, I don't often write on here but wonder if anyone can help me over this question.
My pain levels are very bad and have got much worse over the last year to the extent that I can't walk more than about 50 yards outside and struggle to get about the house. My pain is in every joint and I am concerned about how much worse it has become. I am on Mtx, Hydroxy, Prednisolone and take Tramadol and Paracetamol. I have asked about being put onto biologics but always get the answer from the rheunatolgists that I am not suitable for it. In the past I have been given steroid injections into my knees and toes and also general ones into my bottom. They have always helped, sometimes a lot. However, the last ones I had which were into my knee and a general one have not helped at all.
What has made things even worse is that in February I had two falls and ruptured two tendons in each shoulder. The orthopeadic surgeon I saw said that an operation to repair them would be of no use as my tendons have worn so thin that they would just tear again. He said I would never get the full use of my arms back and would always have pain there. I now need my husband to help me dress and undress. I am doing all the exercises given to me by the physiotherapist which has helped me quite a lot but there is still a lot of pain and weekness there.
I was put onto Fentanyl patches at 12mg about five weeks ago but they made no difference at all, so last week my doctor upped them to 25mg. After using two patches, I became very itchy all over. I didn't think about it being the patches until last night when I felt I couldn't stand the irritation any more so I took the patch off. After a couple of hours the irritation was so much better and there is only a little bit of irritation this morning so I think it has proved that it was caused by the patches. Incidentally, I hadn't felt any pain relief on even the 25mg patches.
I feel I just don't know what to do for pain relief as it seems that nothing is working for me and although I keep cheerful most of the time, I have to admit to breaking down and crying yesterday.
I just wondered if anyone else seems to be at the end of what to do for pain?
I tend to agree with you Mmrr. I don't have another appointment to see her until August. I have an appointment with my GP the week after next and it is him who put me onto the pain patches after being requested to do so by the rheumatolagist.
I agree that you need to have some contact with rheumatology, do you have a ‘hotline’ number that you can leave a message on? That’s what my rheumatology dept has and they are very good at getting back.
It has always amazed me how much more effective for joint pain NSAIDS are than things like fentanyl. I was on diclofenac for years (which has its own issues, but sometimes you have to) and have also been on loads of other pain meds for different things, and even when on a high dose of morphine the diclofenac made more difference to painful wrists than the morphine.
I know they aren’t suitable for everyone but it could be something to discuss with rheumatology? But that should be short-term because it sounds like they haven’t managed to control your inflammation yet, so in my opinion they need to do something about that as well.
I have asthma as well but I could take 2 tabs before I felt breathless they work if you can put up with a little short of breath you have to weigh it out good luck I feel it for you
That's good that you can manage that. The trouble is that with me, it gives me pain in my chest and a very upset stomach so I just can't tolerate them at all.
My mum was allergic to the adhesive on her patches so they were changed. I'd contact the GP to get another brand. I've never had them but seem to recall this name before and she's the only person I know who had them for spinal fractures and then changed they worked well.
I have been using fentanyl patches for the last 8 years with very good pain control. As with many other types of medications, pain medicine is begun with a low dose and slowly titrated upward until the dose is reached that controls the pain without unacceptable side effects. It takes time and patience. The drug has to attain the proper level in your blood stream, and that takes a while. Also, the dose has to be increased slowly so that your body has time to adapt to the higher amount. Too fast and you would OD. It sounds as though you didn’t come close to using it for a long enough period of time. As for the itching, all opiates can cause itching. It’s a very common side effect. Fortunately it’s one that tends to go away with time. Didn’t you receive any advice from your Dr? If not you might need to find another Dr. There’s medication that can help with the itching. Your trial of Fentanyl patches didn’t last nearly long enough.
Morphine based meds tend to cause itching. Antihistamine sorts it out, I use clarityn but ask your pharmacist for advice. I use diclofenac too as pain relief alone isn’t enough. Again discuss with your gp. Hope your feeling a little better soon 🤗
Personally for me the patches would not give consistent dose. So I changed to MST ( morphine sulphate tablets) my consultant advised this for me. I’m now better in control of my pain. We are all different withmedications. However it might be worth a discussion with your gp Sorry your struggling so much
Hi holly-willow, I just wanted to sympathise really, what you're suffering sounds really bad. I have bad reactions to almost every painkiller too, so most of the time try to battle on without anything, but your pain level sounds a lot more severe than mine. Sorry I can't suggest much more than everyone else has, like keep telling the medics how much pain you're in. Plus, I wonder why they say you're not suitable for a biologic? They really help a lot of people.
Oh, one last thought - I'm thinking about trying acupuncture for pain relief, maybe a possibility?
I used to have acupunture Scotslass, and it did help quite a lot. However, it doesn't seem to work now and I have been told that it has been proved that it doesn't work for back pain. I think that may be true as thinking back, it helped with my knee pain etc but not my back pain.
The level of toxicity in your system with all those powerful meds must be horrendous, and getting in the way of each other. Adding yet another toxic med imo would do little but complicate things. The pain is caused as I'm sure you know, by inflammation. After all your body's been through, maybe time to simplify. Good quality CBD oil is widely respected as hugely effective for your complaint; it's non- toxic and it doesn't conflict with other meds except anti-coagulants. That plus an anti-inflammatory diet would very likely ease things considerably. God bless n good luck
Yes I agree - I tried the CBD oil but was having trouble sleeping before I tried it, and it said can cause insomnia, so I sort of gave up!! But it seems to help lots of people.
Sounds like you are having a major flare. I feel for you and so hope you get some relief very soon. Yes I would see your rheumatologist, to get your immune system under control. Hang in there and good luck.
I did wonder about a flare, but have looked back and realise that it became so unbearable last November and surely I wouldn't still be having a flare six months later?
Your post made me cry, being in pain is so wearing and debilitating, I wish I could give you a hug. 🤗
I am not in the same position as yourself but similar in the way that pain relief doesn't work. I am also on tramadol with paracetamol, this eases things but does not take the pain away. I am also on amitriptyline. The mtx and sulfa are not seemingly doing anything as my joints are getting worse and like you I am finding it more and more difficult to walk. I am hopeful of being tried on a biologic later this year but won't hold my breath. What more can I say other than keep your chin up and best foot forward. I think we are just unlucky that our brains do not respond to the pain killers or what I find is I walk around like a zombie still with pain!
Oh friend, this much pain is like an emergency situation. I am from the states- I don’t know much about medical care where you are. Here if someone is in dibilitating pain, we would go to hospital, or request an emergency appt with rheumatologist. You need rest and relief, I am praying for an answer for you.
Hi Holly, I also had pain in every joint, apart from elbows,I was eventually given MST morphine Sulphate 20 mg twice a day ‘ Oromorph for breakthrough pain. Prior to this I had tried lots of pain relief, tramadol high doses & no effect, I could not sleep for longer than 45 mins.Everything got much better with the morphine, I do not feel drowsy at all & can function absolutely fine, no one would know I was taking it.I also take diclafenac & am on Pred 10 mg a day at the moment,had to stop Sufasalazine because of rash at maximum dose of 3000mg.I am about to start Methotrexate this week.I would advise to call your GP or Rheumatologist for advise on pain medication, I understand how awful it can be, as I am sure many others do too.We are all different & react differently to meds. I hope you get relief very soon,take care xx
I am going through lots of pain in my hands myself and it just keeps me awake most of the time as I have already had a trapeizectomy (thumb socket) removed from my right hand and now waiting for the same to be done with my left hand, but suddenly got told by my GPS surgery that the lansoprazole I have been taking for the last seven years for my stomach has a very severe side effect to the joints of the hands and knees, so was taken off it and given ranitidine instead, so I just stick to taking a couple of paracetamol a day to try and get the pain down
I’m so sorry to hear you are in such pain. I’ve been there. Call your dr’s! Get in!
Iin the meantime, I use Heat or cold for pain relief. Hot bath/ showers, sometimes a few per night give me a few hours of relief. Cold applied locally Helps me as well.
So sorry to hear you are suffering so bad. I am on MTX injections, fentynal patches, tramadol, , diazepam and still suffer with pain. I actually saw a doctor at the pain clinic today and they are going to give me trigger point injections. Have to wait for appointment to have them done at a different hospital. He said I will be having 14 injections, which sounds a lot. Will try anything to not suffer with constant pain. Am really hoping this will help. Has anybody else tried these injections with success at all please?
I know just how you feel Kings. I have never heard of trigger point injections, but I know what you mean about getting to the stage where you will do anything to help the pain. Today, I had great difficulty just walking from our front door to our gate (about five yards) and I was walking like a snail and holding my back. I have to see my GP again on 29th and will see what he says.
Hi Holly-willow so sorry to hear about your pain. Like you I have a hiatus hernia and cannot take NSAIDs and have tried numerous other pain medication options which don’t seem to do much. I don’t have your disabling level at the moment although remember not being able to dress without help and how depressing it is especially when no end in sight. My foot pain and hand pain are still constant though and really affect my quality of life. Unfortunately my new Rheumatologist (wish my phone would stop capitalising that word like he is so important 🤨) is not helpful and like you I feel despair about the continuing pain and just left alone to handle it.
I have tried acupuncture which works but then wears off and is costly. I am now looking into hypnotherapy as studies have found it effective for helping with chronic pain control . In fact there is a recent US study out specifically about hypnotherapy being effective for long term back pain. I don’t know how to post a link but if someone can tell me I will try to put it on here for you.
I have also used a pain meditation on the Headspace app. It doesn’t cure it but it helps me persist regardless.
Hang in there. I wish there was an easy answer. Wishing you some relief.
Thank you so much for your kind reply Blighty. My pain levels have got so bad at present and I can't seem to get an appointment to see the GP until the week after next. Yesterday I just picked up a file and it hurt my shoulder a lot where my tendons have ruptured. I am still in a lot of pain from that and it is getting so that I feel there is less and less that I can do and I really don't want to end up housebound and sitting in a chair doing nothing all day. I was in so much pain yesterday that in sheer desperation I put one of my pain patches on again even though they were making me itch all over. I read so much about how people with various forms of arthritis should be able to get pain relief and not suffer pain but in my case it just doesn't happen and I get the feeling that they just don't know what to do with me.
I feel your pain almost literally, I'm so sorry for you x
Thank you Summer. I was so desperate for some relief from the pain at the weekend, that I put another of the morphine patches on, even though that had appeared to cause such bad itching. Surprisingly, they have not made me itch and I am getting some relief from the pain. I still have some pain but there is a definite improvement and I have been able to do a little bit more. It is such a relief to get something that is helping.
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