Really tired of this constant horrible pain. - NRAS


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Really tired of this constant horrible pain.

holly-willow profile image

Hi to all of you. Sorry to moan, but I am just so fed up with this awful pain just about everywhere. The main places are my lower back (so bad that I can't stand for more than about a minute), my knees (I can only walk a few steps) and my shoulders and arms (which crunch and clunk) and I can't even put my arms behind my back anymore. Things have got so much worse in this past year and it is really getting me down. My husband has to help me to get dressed and undressed and I can do very little. I can no longer use my mobility scooter as I can't manage to reach out to the handles because of the pain in my arms. I really never thought that I would get as bad as this.

I am on mtx, hydroxy, prednisolone and pregabalin as well as tramadol, paracetamol, oral morphine and morphine pain patches. I have asked about biologics but always get the answer that they wouldn't be of any use to me because mine is more OA than RA. I may have PsA as well, but the rhuematologists aren't sure about that. I also have fibromyalgia, gout and degenerative disc disease. I don't know what to do anymore as there seems nothing left to try. I have seen physios but nothing helps and in fact the exercises seem to make things worse.

I have an appointment to see a neurologist this afternoon because my hands shake all the time, but I have been told that it may be side effects of all the medication I am on.

I really don't know why I am posting this but I just felt I wanted someone to know. I just want to cry. The pain is never ending and I don't know which way to turn. Thank you for listening.

25 Replies

I Feel for you. It's so awful when you can't get relief from pain. Our hospital offers a pain management service . It might be worth asking if they do one at yours or considering one for you x hope today goes well.

holly-willow profile image
holly-willow in reply to allanah

Thank you Allanah, I have been to pain management clinics at two different hospitals. I have tried acupuncture, hydrotherapy, physio and more but nothing really helped. To begin with, the acupuncture helped but after a while it seemed to stop.

allanah profile image
allanah in reply to holly-willow

Sometimes it just feels like you've hit a brick wall doesn't it. Thinking if you x

I'm really sorry you have so much horrible pain. Do tell your neurologist about your pain, not just the shaking. A different perspective might help. x

holly-willow profile image
holly-willow in reply to

Thank you Norisa, If at all possible, I will tell the neurologist about the pain. Sometimes doctors just seem to rush you so much that you don't get time to tell them all you want to.

in reply to holly-willow

I know. It was sheer determination that got a sentence squeezed in at my husbands last appt. Maybe have your question written down and say that you really need to ask it. They may be rushed, but we hear all the time of patients who don't turn up, so claim a few minutes if you can.

It's sounds like we share the same pain and problems with app to quick to explain and just end up with lots of pain tabs patches all morphine based think they do cause twitches and shakes it's just part and package of side affects but I think it's the desease as well

I can hear the desperation in your post HW. It's awful when you have so much pain you don't know what to do for the best. My experience of the greatest pain was when my OA wasn't well enough medicated. My GP went through all my meds & changed some, added others. So, what really helped was adding buprenorphine patches, my NSAID was increased (has since been reduced but still coping even if I have to take it every day instead of every other), my co-codamol dose was increased & gabapentin changed to pregabablin. Maybe looking at your meds would help?

You don't mention an NSAID. It's common to treat both RD & more specifically OA with them. Mine is a COX-2, etoricoxib, so if you aren't prescribed one maybe that would help ease inflammation-causing pain.

I did try oral morphine for a while (Oramorph) but it really didn't help even though the dose was increased & I felt I was on enough to be honest. Tramadol I've never tried, it was something my GP had listed when she reviewed my medication but understood why I didn't want to, I tried gabapentin instead which didn't work so I switched to pregabablin which has done for some while now.

It will be interesting to see what the Neurologist makes of your shaking hands, if it is med related or something else. I had 2 separate rafts of tests for neuralgia that I was convinced was a result of a med, the first whilst on it & the second when I'd stopped it. My Rheumy wasn't convinced it was the med, it is a side effect but rare, but my symptoms had improved by the second & have since gone altogether so it was a big coincidence if it wasn't med related. More importantly the Neurologist though it was most likely to be the med causing it comparing the test results.

Keep in touch, let us know how you get on & do ask for a med review, it could mean your pain is easily sorted if you're not taking the best for the job. There are options out there for you so don't despair. Also, our bodies can become used to a meds over time so it could be something needs an increase in dose or changed altogether. If you don't have one I find an electric heat pad really helps with worst affected areas, particularly my lower back. I also have a heated foot muff, really eases my painful feet. Worth considering if you don't have either.

Hugs darling thatn all i want to say and know your not

I felt like this last week, I cry sometimes but hide it from my family as they worry about me more than me lol! But I do have good days and Sunday was one where I felt as if my RA had gone! Okay, I know it would rear its ugly head and it did, and I got through, as stressing for me equals pain 😬. The good days are lined up don’t despair. Sending you a ton of wellness. Hessie

I csn

Nothing more to add. Thinking of you and do keep pushing for help. Hugs.

Hi again, I have seen the neurologist this afternoon and the good news is that it is not Parkinson's but is "Essential tremour" and they are going to put me on a mild tablet to see if it helps, but the main thing is that it is nothing to worry about. They would have put me on beta blockers for it, but because I have asthma, they can't give me that.

After I got home, I had a phone call from the hospital to go there next Thursday to have some nerve block injections put into my shoulders to try to ease the bad pain there. I have been waiting for them for some time now and was told that the earliest it would be would be at the end of December, so I am pleased that it is going to be earlier than that. Thank you for all you kind words and thoughts.

in reply to holly-willow

Sounds that the verdict was a relief and injections aren't too far away. Take care

Dear holly-willow

Really really hope your appointment with neurologist was a successful one this afternoon

Thinking of u

All the best

Thank you Storm petrel. I have written about it above. x

I’m so sorry for all your pain. Sending love and strength your way. ❤️🙏🏻❤️

Thank you for your kind thoughts Nablur. xx

So sorry to hear about all your pain. You have my every sympathy and gentle hugs.

When I go for medical appointments I take my questions written down - my rheumatologist actually takes the paper off me and goes through the questions.

I used to go to a rheumatologist who was absolutely useless. I once took a list of four questions neatly typed out for her. She pushed the list to one side and said that she was too busy to read it. That was after being called in more than an hour past my appointment time. I complained to PALS and changed to another hospital where I see a much better rheumatologist. PALS looked into it and got back to me saying that the rheumatologist in question was about to retire, but that she had asked to stay on part time, but had been refused, so it sounds like she was not very good. My GP received a letter from her stating that I had taken along a list of questions but that she didn't have the time to look at them. My GP said that he thought it was disgusting.

It was disgusting! It’s a good job there was another hospital to go to. I have never had any issues with my hospital and my rheumatologist is a lovely man. I vavevseen him at least twice a year for the last 14 years. The consultant I see for lung issues is also very good.

Has anyone done back exrays to see if there is a problem affecting your vertebrae? Maybe a pinched nerve? My young neighbor just told me yesterday that a doctor just found that she must have had a childhood accident that broke her back now they are going to operate to release the nerve in her back that has been causing all her pain for years. A same day surgery may immediately give her pain relief. I’m hoping all the best for her and you as well.

holly-willow profile image
holly-willow in reply to BonnieT

I have had both Xrays and MRI scans on my back and they have shown that I have degenerative disc disease and that some of my lumber areas have deteriorated badly. There is nothing that can be done about it except for maybe some nerve block injections into the spine, but there is no guarantee that they will help and they could, in fact, make things worse. It is an awful situation to be in.

I’m so sorry your in so much pain. We are all here to listen so let it out whenever you want. I hope something can be worked out for you

As I am new to the group I don't know the rules about the discussion of medicinal maujuana. Here it's a very grey area. You are entitled to smoke in your home but not sell. Nevertheless we live in a lawless country and they have the vape stores that sell , please excuse my ignorance of this, the gaping stuff that contains the. I know when on biologics one should definitely not vape. There are placesthat sell cbd oil and edibles. ...I could go on. If you as for HTC they have behind the counter. If I honestly can tell you that its a lifesaver for me. I actually have just finished making my own oil as a botanist did research for me and taught me how to make my own. When I don't take it , I pop any and every painkiller, anti inflammatory I can. I double, triple the dosage. I land up going to casualtiesat all hours. I'm known by my name in two hospitals in my area. When I take my oil I don't touch a painkiller. I take the THC at night as it helps me sleep. In the day you can if you need take the cbd. Please if there is anyway you can get please try , YOU won't be sorry. My heart just goes out to you!!! You posted because we understand! !!!!???

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