Questioning my ability to judge pain levels

[Sueb24]

People find this to be true no matter what their trouble is, I think. In my life I have found people to be intensely disappointing. I have never abandoned a friend because they were having difficulties, but most of the people I thought of as friends have stopped attempting to communicate with me. At this point, I am just letting it all go because I just don't have any energy for chasing after people who don't have time or inclination to reach out to connect with me. It's sad, but I am starting to think maybe I am better off just with my dogs.....and with the people on this forum, who show each other consistent caring and support and who understand what we are going through. I am grateful to all of you for the connections we have here.

This is my experience too but fortunately it hasn’t really bothered me until I lost my husband last year because he, and my daughters, were always there. The girls still are of course but they lead busy lives and I can’t bother them all the time.

It is true that unless you have experienced something - be it a death of someone close, divorce, a severe illness or whatever - you really don’t have any idea of another person’s suffering and after a while people tend to just drift away unless they are very good friends or just ‘good’ people. I still have faith in people but it has certainly diminished over time. We make our own way through life don’t we?

 

[Sueb24]

Hiya @Sueb24 I agree. I would rather someone said nothing rather than the trite comments made if we try t o explain our pain. I am sure some people are well meaning, but this constant no relief pain is hard enough to have explained let alone living with on a 24 hr basis.
I prefer now, should someone enquire that theres good days ( lie ) and bad days. I usually brush off the comments of others but was caught out on a vulnerable day.

A rant does help! But also the knowledge that others really do understand. Whilst that is a comfort of sorts, there is always a slight guilt attached that others have to live like this without the lack of understanding from those about us. @sunkacola had the recent experience of a 'friend' who clearly ignored her explanation of why she should not be disturbed at night and @JamieMarc whose neighbours ask for help on heavy tasks that will exacerbate his pain.

All of us seem to need and 100% deserve if not understanding than certainly belief of our pain.

lets not get into my appt woes.... take care

Hiya SBee. I have been feeling a little better of late but I’m very confused by some of my symptoms which developed in the last severe flare up. According to my consultant, since fibro is a syndrome, most symptoms diminish or disappear together. That has been my experience largely in the past but this time it doesn’t seem to be happening. My sleep is much improved, I’m not getting the horrendous muscle spams at the moment & a good deal of the pain has settled more to cope-able level. I wouldn’t say I’m in remission but it is certainly not as bad as it was. I still have neuropathy, lots of aches and pains and RA but I feel in control more. I’m trying to ‘enjoy it’ whilst it last! Still awaiting MRI results.

How are you at present?

 

[sunkacola]

@Sueb24 I am very sorry you lost your husband. My partner died, so I know what it is like to lose your #1 person in life, the one that you count on to be there in the good times and the hard times. I found that the worst of it for me was that there is no one anymore for whom I am the person who will always be there. No one needs me like that any more, and that has been the most difficult thing for me. Fortunately, my dogs will always need me, so I have focused all of that energy on them.

 

[SBee]

Hiya @Sueb24, definitely appreciate the lull in your symptoms. I am sure most of us assume things such as this can only be temporary, and nervously await the next flare up. But its a fact that individual symptoms can lessen and I am convinced an improvement in a single symptom can have a positive affect towards other symptoms.
A good restorative sleep cannot be underestimated in my book, has a huge effect on a day to day basis. My own sleep seems helped by certain needed meds, but I will take their bonus soporific effect with gratitude.

Thanks for asking, I am okayish. My hands are still pretty awful. I had to add hydroxychloroquine on to the methotrexate for the inflammatory arthritis, which has helped a bit. Bit of a nightmare with the rheumatologist dept, I was diagnosed in April, and was due a follow up appt with the consultant in July. After months of chasing this up I finally got an appt for Feb next year problem is the consultant left and no one can understand the diagnosis he made. Not the nurses, my gp and not me.
I think I have osteoarthritis as well as the inflammatory arthritis in my wrists and hands ( a!so hips and knees ) , and I also believe I have tendonitis in my wrists. So this makes me unsure what is causing the constant pain and therefore best methods of treatments. So its a bit of self medication and hot\cold therapy with no heavy lifting etc to do my own therapies!

I will have hand occupational therapy for 3 weeks in January so thats a good start. Physio wise?? One year one and still waiting, should be via chronic pain clinic. But still standing. Mostly

 

[JamieMarc]

there is no one anymore for whom I am the person who will always be there. No one needs me like that any more, and that has been the most difficult thing for me.

This is true for me as well. It has been one of my top priorities, and still is, to find someone who loves and needs me, and I him. It's so important to me, and something I am working on in therapy. When I have someone special, they bring out the best in me and I feel so much better mentally, emotionally and even physically. I have found that having a partner, or even a best friend, always makes me feel better when I am around them. I don't know if it's a distraction thing or a dopamine thing or what. I just know it's true. It's a mysterious, beautiful thing and I still have hope that I will find someone like that someday.

Until then, like you @sunkacola I've got my furbaby, Coby. And even if I don't ever find that special someone, I've still got him.

 

[JamieMarc]

I had to add hydroxychloroquine on to the methotrexate for the inflammatory arthritis, which has helped a bit.

I just spoke to my sister the other day (she has rheumatoid arthritis), and she is taking both of those meds as well. I asked her because of my own hand issues. I was curious what she was taking in preparation for my own next visit to my arthritis doctor. I fear that I have RA as well as my OA, but I'm not going to borrow trouble. Maybe it's something else.

I'm sorry to hear that your hands aren't getting much better; that you're not getting as much relief as you'd like. Thinking of you.

 

[30 plus years]

I think I have osteoarthritis as well as the inflammatory arthritis in my wrists and hands ( a!so hips and knees ) , and I also believe I have tendonitis in my wrists. So this makes me unsure what is causing the constant pain and therefore best methods of treatments. So its a bit of self medication and hot\cold therapy with no heavy lifting etc to do my own therapies!

Have you tried hot paraffin wax for your hands/wrists? It's really soothing and as a bonus, it moisturizes cuticles nicely!

 

[SBee]

I hope @JamieMarc it doesnt prove to be RA, or similar. For me it was just like ' yeah go on, why not just chuck another condition at me to join in the rest'! I know this is something you have wondered about for yourself. If it is, then the sooner you get on suitable meds the better.
you know
I am up there with you in the research stakes, so as always, if I can help with any info that may help you my friend, just ask. Good you have found a new rheumatologist who is listening and you can work with.
No idea if mine is hereditary, no one I know in my family had or has RA, but autoimmune diseases are all over the family. My personal theory is that once our bodies are stressed with illness it leaves us vulnerable to others attacking while the body is weak.

 

[SBee]

I am definitely going to order some. I know its an old remedy and the reason they are still used is simply because it works. Had forgotten about this. And my cuticles could do with the tlc as well!

 

[JamieMarc]

@30 plus years what does the hot paraffin wax do for your hands? Would it work for me? I wake up every morning with very stiff, swollen hands and fingers, and also at night. I even had and still have some residual trigger finger. It's all very painful, and I'm wondering if paraffin wax would help me.

I don't have a diagnosis yet for what I'm experiencing with my hands, but any personal experience or information you can give me would be so much appreciated.

 

[30 plus years]

@JamieMarc The wax, which semi-solidifies on your hands after dipping, retains a nice, soothing warmth for a little while. It definitely helps with pain and stiffness. Mind you, the wax is extremely hot to dip into. Not so sure if it would be appropriate for inflammation...

 

[SBee]

Versus Arthritis site does suggest using paraffin wax, but does not specify if for osteoarthritis or inflammatory arthritis. I have both but am going to try. An occupational therapist and the the nurses advice moving stiff fingers in warm water is beneficial.

 

[sunkacola]

I tried the hot paraffin wax on my hands. It did not help me enough to be worth the trouble, what with melting the wax and then cleaning it off my hands, even though it felt good while it was on and still warm. I prefer using the CBD Rub and then a heating pad if my hands are stiff or painful.
Everyone's experience is different, though, so it might be worth a try. Some people really like it and it helps them.

 

[JamieMarc]

@30 plus years I am going to make a note of this and not do anything that could be harmful to whatever is going on with me until after I have some kind of understanding/diagnosis from my doctor. I know the warmth would feel wonderful but, as you said, if there is inflammation I think it could be counterproductive. Am I right that cold is for inflammation and heat is for healing (drawing blood to the area)?

 

[JamieMarc]

@sunkacola The CBD rub you mention...is it the CBD for Life you told me about previously?