Pain increasing

[mcleod66]

I have observed a gradual increase in the intensity of my pain over the past few weeks. I would like to know if this is a normal occurrence.

 

[SBee]

Hello mcleod66
Many of us unfortunately suffer from flare ups which increase symptoms. Can you think of anything you may have done differently that may have increased the pain? All of us know if we push ourselves too far it can have pretty disastrous results.
Perversely not doing enough moving can lead to worse stiffness. Its a crazy thing trying to balance ourselves, feels like living on a bloody knife edge at times.
Stress in particular can really increase symptoms. Are you getting any support from a GP you can talk too?

 

[mcleod66]

My GP is trying her best to get me back into Therapy but a long waiting list in this area. I suffer from extreme PTSD and serve depression and anxiety along with Autism. With constant visits to hospital and a operation every six months life has been a struggle recently. Nobody in the local health area seems to know much or anything about fibromyalgia and I have had to do all my own research into the condition. I just do not understand why the pain is getting worse or why I'm constantly tired and forgetting things .

 

[sunkacola]

@mcleod66 , it seems to me --the opinion of someone without medical training -- that your extreme depression and PTSD could be causing the pain to increase. Of course, the opposite could also be true, it could be that the pain is increasing and that is exacerbating your mental health issues. As a person with extreme depression and anxiety myself, I know the feeling of wondering what is increasing what or if they just go hand in hand. I know for a fact that depression and anxiety will cause extreme fatigue, and I deal with this often.

I do know that for me, if something can make my day better emotionally it will help and if something is badly upsetting it will make everything worse on a physical level. If therapy would help you, I encourage you to pursue it.

 

[dramaqueen]

Hi there,
I am new to forums so bare with me,female living in the UK,started off with ME years ago & within the last 10 years now Fibromyalgia.
I haven't been right since January this year after I developed Covid for the first time ill for 6 weeks thereafter I got shingles. As I have a low white cell blood count & can't fight off infections I get all the preventative jabs. So the GP advised me wrongly to have a spring Covid jab & I have gone down hill !!! Now I have pre Covid syndrome ? I have had new pain symptoms for the past 4 weeks that are unbearable 24/7 ???
I can't sit down or lie in bed so no sleep or rest not that I sleep much anyway. So I have turned unfortunately to have a couple of glasses of wine in the evening along with pillows & hot water bottles takes the edge off slightly. Not that I can get a GP appointment living in the UK !!
The GP's phone call tells me I am depressed & run down, I can't take meds because of the side effects, even the pain patches cause issues.
Now R Arthritis has been mentioned as well ?? What does someone look like from the outside with pain ? Unless you walk in someones shoes you have no idea. I am waiting now to have a CT scan !!

Best wishes Constance Xx

 

[mcleod66]

I am hoping to go back into full-time therapy but as usual the NHS don't have enough therapist in my area. I have been trying mindfulness but sometimes I find the pain getting worse especially in my shoulders, neck, and back. Getting someone who understands Fibromyalgia is not easy and getting treatment in my area is very difficult, I'm starting to wonder if I'm causing the pain to increase.

 

[SBee]

Hi @mcleod66
i understand the frustration of waiting for an appt for therapy, had long ling waits myself. I dont know if it will help, but have you tried the UK site FMA UK? A fibromyalgia site that has helplines where you can talk with ' real ' people who have fibro themselves or within their families.
Speaking with someone with such experiences may help you in the interim whilst waiting for your appt.

Unfortunately, I agree with you that finding a professional with knowledge of fibro seems near impossible. Whilst I have a supportive GP who will discuss meds with me, 99% of my knowledge of fibromyalgia has come from this very forum. I find it true that much of any improvements is due to the work we put in ourselves. And thats hard to accept when generally we look to medical professionals for help in most health issues.

My worse nerve pain is neck and upper body, and some gentle exercises can help a little.

 

[SBee]

Hi @dramaqueen

Welcome. Strangely I had chronic fatigue syndrome many years ago, which improved and now have fibromyalgia a symptom which I really struggle with is ... Chronic fatigue. ( amongst other symptoms ). For myself, but like you, my health deteriorated with a huge bundle of heath problems, both physical and mentally. My thoughts are sometimes the body gets so wrecked it simply cant fight off further ' attacks ', stress of any kind as I am sure we all know amplifies physical health.

Whilst you seem too sensitive to medications, and I believe many of us with fibromyalgia and additional chronic conditions also suffer with anxiety\depression. I find the relentlessness of pain and fatigue so hard to deal with some days. It almost overwhelms me.

But its good that your surgery is also still doing further blood tests to make sure nothing else is also going on. Rheumatoid arthritis and fibromyalgia do sometimes seem to go hand in hand. i was diagnosed with inflammatory arthritis in April, just 4 months after getting the fibro diagnosis. ( already have osteoarthritis ).
Although im kind of glad to get any confirmed diagnosis, I then think well what am I supposed to do with it now? For me, its finding out for myself what helps me. That takes time, its no quick fix, and takes some experimenting. I do take meds, some for existing conditions, and some pain killers and meds for nerve pain. I try to pace myself ( and fail spectacularly some days ), try to eat well, exercise slowly, a bit of chair yoga\meditation.
And crucially I use this forum for advice and support because no one can, as you say yourself can know what its like better than others experiencing similar health issues.

 

[Sueb24]

Hi @dramaqueen

Welcome. Strangely I had chronic fatigue syndrome many years ago, which improved and now have fibromyalgia a symptom which I really struggle with is ... Chronic fatigue. ( amongst other symptoms ). For myself, but like you, my health deteriorated with a huge bundle of heath problems, both physical and mentally. My thoughts are sometimes the body gets so wrecked it simply cant fight off further ' attacks ', stress of any kind as I am sure we all know amplifies physical health.

Whilst you seem too sensitive to medications, and I believe many of us with fibromyalgia and additional chronic conditions also suffer with anxiety\depression. I find the relentlessness of pain and fatigue so hard to deal with some days. It almost overwhelms me.

I really agree with all of this. The body being ‘so wrecked’ resonates completely. On better days I ‘cope’ and those people I come in contact have no idea how much pain or distress I’m feeling because I appear to be out & involved with the world. But, inside I’m wrecked, and the slightest additional health issue can just tip everything right over the edge & cause a withdrawal from everything and everyone until I can ‘cope’ for a little while again. It’s relentless & it’s cruel.

 

[SBee]

Hi @Sueb24
Relentless is a word that resonates so much with me to. Wake up in pain, go through the day in pain, go to bed in pain, broken sleep because of pain. Its endless.
I definitely have the 'public' face and the 'private face '. It really is cruel feeling like we say we 'cope' as though its a huge achievement when inside we're in pieces, trying to balance it all as experience shows that one false move and it all falls apart even more.

I have a group video call tomorrow with a chronic pain clinic that includes a clinical psychologist so I know that hidden side of me will come to the surface again and I wont be able to hide it away anymore. Feeling morose but sending a gentle and ( as anyone on here knows ) a fully understanding hug your way

 

[sunkacola]

Most of us with fibro have a public face and it hides what is going on inside us. People who do not practice this find they don't have friends any more, most of the time. No one wants to be around someone who is not putting on a brave face, and of course I can understand that.....I don't want to be around people who spend a lot of time complaining, either.

But I know that most people have no idea how much energy goes into putting on that appearance of being OK - how exhausting it is, how much it takes from us to do that. And if a person is naturally an introvert, such as myself, it takes even more energy. For me, the result is that I very rarely any more spend time around other people.

I do the front of being all right for myself as well, because it sure never has helped me any to complain or to show to the world how bad I feel or how much pain I am in or how depressed I am. It only makes things worse. But spending time with the "I'm fine" front in place means that the energy spent doing that cannot be available for other things, so it has to be "budgeted".

Most of us are stronger than people give us credit for being.

 

[Sueb24]

I have a group video call tomorrow with a chronic pain clinic that includes a clinical psychologist so I know that hidden side of me will come to the surface again and I wont be able to hide it away anymore. Feeling morose but sending a gentle and ( as anyone on here knows ) a fully understanding hug your way

And back at you @SBee Good luck with the group video call. I’m not sure I’d be up for that to be honest. I did a number of video calls with a private counsellor specialising in people with chronic health issues & that was hard enough. That’s finished now but I’m not convinced it helped much.

 

[SBee]

Agree @sunkacola suspect most of us use the ' oh, I'm fine ' attitude. Sometimes its because I simply dont have the energy to try to explain whats really going on, because most people would not understand ( and as we often say on the forum why should they? ), and also because many of us are brought up in and environment where its just seen as plain wrong to complain. and yes, its exhausting keeping up that false front.

Its just atm I' m in a phase where just everything is exhausting and relentless. I guess it will pass but when we're caught up in such a place its hard to see a way out.

@Sueb24 .... Well the pain clinic video meet was fun (said with incredulous sarcasm) was expecting an assessment but turned out to be an assessment to see if I felt I needed an assessment. So on another waiting list which will not be actioned before far into the New Year, and then after that, a longer wait to sort a plan if treatment!
i asked to be referred to physio in January, after several months I was told two lots declined to see me as my health was too complex, so referred to the chronic pain clinic. No wonder my MH is declining...

Touch wood I have hand occupational therapy this week to help with the inflammatory and osteoarthritis I have in all fingers and wrists. i am trying to keep everything at bay before it sets off another fibro flare. must say this juggling of overlapping symptoms is getting to me now.

 

[sunkacola]

Its just atm I' m in a phase where just everything is exhausting and relentless. I guess it will pass but when we're caught up in such a place its hard to see a way out.

I'm there with you, SBee. Just utterly exhausted with pretty much everything at the moment, it seems.
I don't think there's really any way out, at least that is how it is for me. I just keep putting one foot in front of the other and sometimes I hit a patch of time that is, inexplicably, better for me for a while and then I revel in that for as long as it lasts.

was expecting an assessment but turned out to be an assessment to see if I felt I needed an assessment.

Oh, good grief. That is just ridiculous. And people wonder why those of us who have chronic illness and/or disability are sometimes grouchy?!

 

[SBee]

Thanks @sunkacola you are so right. I tried to explain to the assessors for PIP benefit that there arent actually ' good days ' its more a case of days that arent quite as awful as most days. And that, in our terms, it what constitutes as our version of 'good'.

Whilst I have accepted that I have (lifelong) chronic conditions, the accepted knowledge of this is of course far different to the reality of living with them on a continuous basis. Although I do not consider myself as being in a flare, I do think the long waits for professional help is wearing me down. I do of course implement many day to day changes in my life to give my body as much strength and protection as I can, but am in need of practical professional help as well.

Meanwhile, as you say, one foot in front of the other. Go hug your dogs - a total guarantee for feeling uplifted.