2 questions for you: Although I am in a much better place pain wise than I was, I still don't feel great. I have a constant all over achy feeling, almost like I've done a really hard workout at the gym. Is this normal? I had hoped that once I was started on a biologic that I would be back to my old self, but that hasn't quite happened to the extent that I had hoped it would.
Also, one of the most debilitating things about this condition I have found is fear. I had a really sudden severe onset of symptoms at the start of 2016 which was hugely debilitating, and have now found that it has left me with an underlying anxiety that I could could have another massive flare again at any given moment. It's almost like there's a ticking time bomb inside of me and I have no idea when it's going to go off. Does anyone else feel like that? My GP diagnosed an adjustment reaction to getting a diagnosis of AS and I was started on medication which is definitely helping. I'm now more willing to try things, rather than trying to wrap myself in cotton wool to prevent another flare. Have never felt this way before, it's horrible. Just goes to show that your physical health and mental health are so closely linked to each other, they're impossible to separate.
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Mhairi54
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Don't know if any of the suggested 'treatments' are useful/ applicable for you, Mhairi54? 🤔
If interested in a 'deep dive' into the 'psychological' aspects, there's more at: Healing Power of Resilience, Optimism, & Hope: Moving Forward from Trauma, PTSD, Physical & Psychological Abuse & Illness — Dave Pelzer: healthunlocked.com/nras/pos...
'Anxiety/ fear' is interwoven into the aforementioned post's topics, which can delve into some dark places 🌚 🕳 , some of which may or mayn't be of interest/ relevance? 🤔
Nonetheless, whatever it takes to get us to the 'other side' 🌈 🌝 , can be worth exploring. 🕵️♀️ 🔎
With the combo of disease/ meds not only affecting our 'body' 🚶♀️but our 'mind' 🙇♀️ , it's a difficult, double hurdle to overcome — not an easy feat 👣 .
Don't know if this type of thing (microbiome gut/ brain connection) interests you, Mhairi54:
Dr. Richard Matthews touches on anxiety at ~ minute 15:00 in video at 'Oats as Cooked Oatmeal or Fermented Overnight. Rolled, Steel Cut, or Whole Groat. Prebiotic, Probiotic, not Idiotic via Dr. Richard Matthews.': healthunlocked.com/cure-art...
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Relevant transcript segment:
"CP: . . . these patients that you have who you sometimes find have no lactobacillus range. Now do you also observe a greater degree of symptoms with those people that match off with the worst lactobacillus range of bacteria.
RM: Yes actually I do. One of the things that I see often is anxiety. And one of the things that lactobacillus and the microbiome has been attributed with, that was actually one of the first findings that gut bacteria can influence brain function. It’s quite a hot topic now but 20 years ago it was sort of a back lab bumbling like, wow look at this.
But lactobacillus has been found to change the brain’s sensitivity to the neurotransmitter gaba, gamma butyric acid and gaba is your brain’s primary inhibitory neurotransmitter. So whether the thing you did to inhibit is a recurrent thought of doom and gloom and anxiety that once it’s in your mind it kind of ricochets around and burns up energy and drives you crazy and keeps you sleeping or if it’s the inability to attenuate sounds so that you’re just very easily distracted and overwhelmed and fatigued by high noise environments. Sometimes it’s the inability to attenuate other people’s voices. You can focus on one voice in a crowd something that humans are especially good at doing or should be. But sometimes when we lose that even hearing aids really don’t work. . . . "
Lits of research out there about inflammation causing depression. I'm not depressed exactly, but I've developed the most awful anhedonia. I'm pretty sure it's due to the inflammatory condition. It's an awful feeling. Wish I knew what to do about it.
Agree totally with the feeling like you've overdone it at the gym all the time, which for me makes going out to do exercise even less appealing. I must admit I haven't felt the fear though, if anything I am more risk taking these days on the basis that if I hurt anyway and have this horrid disease, then I may as well try things.
I've had a couple of head injuries that left me not at all like the self I'd known for much of my life and it took a while to get accustomed to living in the skin and thoughts of the different me (so to speak).
I'm pleased that you've been able to chat to your GP and have identified some medication that is assisting you in several ways.
These aphorism sometimes help me and sometimes annoy me. I'd be hopping mad if some people said them to me but from others (including myself) I can accept it, from time to time.
FEAR is:
False Experience Appearing Real;
Fallacious Expectations Appearing Realistic;
False Experience Accepted as Reality;
False Evidence Appearing Real.
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Worrying about things that might happen in the future is like paying interest in the present for a future debt that might never happen.
Worry is the interest paid on trouble before it is due.
Worry does not empty tomorrow of its sorrow; it empties today of its strength and joy.
Worry is a think-stream of fear which, if encouraged, becomes a wide channel into which all other thoughts flow.
I feel for you. It's just something you will have to overcome. You are the one who has to be in charge of your condition. You can't let it get the upper hand and frighten you. I assume you managed to enjoy yourself on your holidays. I speak as one who's been through it and until I was the boss of my condition, it was very difficult to be and think positive. I hope you find a way to overcome your fears. Have you looked at the NRAS website. I'm sure you could find something on there to help you to help yourself. Ring their help desk if you can't find anything. They really are very good. All the very best.
Yes I did enjoy my holiday thanks - my fear does seem to be very specific to my condition and what the future holds. I find it nigh on impossible to talk about it without crying. So I usually avoid talking about it to avoid crying!! So people probably assume that I'm fine because I don't say anything! I feel like receiving this diagnosis has totally messed with my head. Starting medication has definitely helped. I am starting to do things once again, and am motivated to go again, whereas 6 months ago I could see it far enough. For me it's been zumba. I started going back to my old class about 4 weeks ago, and am loving it! I have to adapt the dances to a level I can do, but it does feel good to be participating in it again.
Wonderful, I am so pleased to hear that you are on track. I am a 69 year old man and I found that it helped me and my family/friends that in the first year of RA I just burst into tears for no obvious reason to them. I had to explain that the energy my body needs to fight RA is just so much that fatigue sets in and then I'm just not in control anymore. So don't be scared of crying. You are on your way to remission. It's a good place to be. All the very best.
I've been on benepali for 3 months now,down to 6 mg pred and trying to cut down my dose of tramacet. Same feeling of aches and pains,sometimes I think it's my body reacting to lowering the dose of pain relief...?? Have been on the pills for nearly 3 years so there has to be some dependence going on. What about you?
Have been on Benepali since December 2016. Meant to take Etoricoxib (Arcoxia) as required but am convinced it was causing other health problems that I try really hard to avoid taking it unless I absolutely need to. So try to manage with ibuprofen and paracetamol. So really only on Benepali regularly. I'm not in pain anymore, just discomfort, however feel very fortunate to have been approved for this incredibly expensive medication that I don't want to moan too much. I work for the NHS and know only too well just how little money there is at the moment - only last month, there was so little money that there was a ban placed on sticky post-it notes as they were deemed to be a luxury!!!
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read this re fear and covid The Guardian
Telling you my fears because I just can't tell my family
I do love a glass of wine, but fear may never be able to drink again!
Fear of infection or skin cancer while on Humira 
