Pain increasing

[30 plus years]

@sunkacola 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

That's kind of how I answer the question "So how are you?"
"I take it one day at a time," I reply. And I've never meant it more.

 

[Ian waxman]

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 an 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 .

Yes I do think you possibly could have fybromyalgia.all the strain and stress on your body has affected you emotionally and physically.your gp will be thinking all these markers are leading to this symptom.i don’t mean to be funny but when people say go and see a rheumatologist or some other consultant that isnt going to take your pain away.the more you think about the pain the worse it gets.your in a emotional tangle,which for many of us is the same.my pain was off the radar,currently withdrawing from fentanyl.do not take its hell!!been put on duloxetine and tbh it’s helping gradually.if you think you’ve got fybro do ask for meds but do your research.duloxetine is best and I’ve tried everything in my 30 years.don’t be afraid to take meds they might help and try and do things that you enjoy.good luck and don’t give in!

 

[sunkacola]

@Ian waxman I hope the duloxetine keeps working for you!
I hope it helps you with the withdrawal from the fentanyl. And I am very sorry you are going through such a hard time.

For me, duloxetine (Cymbalta) turned out to be one of the worst medication experiences I ever had in my life, and I have had some bad ones.

It didn't work at first, so the dosage was increased, whereupon the side effects started. There were many of them, all highly unpleasant, but the worst of all was the red welts. Not hives, but little red raised bumps. They appeared first all over my scalp, then down my neck and on my face, and eventually on my shoulders and back. They were painful, and they itched - constantly - to a degree that was almost unbelievable. I was in hell.

The pain I have experienced from fibro was infinitely preferable to what I experienced with duloxetine. When I stopped taking the duloxetine, the welts stopped spreading, and very slowly they disappeared. But it was a full three months after I had taken the last dose of the drug before the last of them went.

So, everyone reading this, take care with all medications!
If someone says that one medication is the best, or is the only thing that works, be aware that this is true for that person, which is wonderful, but it may or may not be true for you.

And even if it is true for you, it may not continue to be a good thing indefinitely. Ian Waxman used to write on this forum that a fentanyl patch was the best thing, and recommended asking for it. But unfortunately that did not continue to be true for him, and now he is recommending against it. This is not to say anything against Ian Waxman! Not in the slightest. We can always only report what our current experience is, and whatever that is, it is important to share it with the others on this forum. That is how we learn from each other. But I am only saying that it is important to remember that medications are tricky at best.

One of the hardest things about fibromyalgia is that there is no one medications, or even two or three medications, that works for everyone, and many of them have unbearable side effects for some people.

Try different things, but remember that what works for one person can be not good for another, and unfortunately the only way to find out how it will be for you is to try it.

 

[Sueb24]

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...

It’s insulting the way these things are handled. My private consultant was very annoyed when a particular physio refused to treat me. If they don’t feel able to treat people they shouldn’t be doing the job. Surely a trained physio would know what to do with most scenarios like ours? All I would say is that they should proceed gently and see how we respond ( this is said from experience). And how exactly can they assess you from a video chat??? Beggar’s belief!

 

[SBee]

Yeah @Sueb24 shows just a little more of the madness of bureaucracy within the NHS at times.. Normally I would be able to almost laugh it off, but as the months go on without physio I am finding that harder to do. Kind of feel its another nail in my health coffin. I try to do so much for myself but am aware I need forms of professional physio as an additional support.

Fortunately the rheumatologists ( not that I have had any contact with the consultant since my diagnosis 8 months ago) saw me at the hospital in their occupational health dept. After much discussion ( and an actual physical examination !! ) they are setting me up for 3 x 3 hours sessions to help with the deterioration in my hands from the arthritis. As they know I have osteoarthritis in other parts of my body as well,and the fibromyalgia they are at least willing to look at the whole picture. Phew.