How do you cope? Pain, fatigue, depression et. Etc

Hi returned from work totally exhausted again and very low. I have RD take mtx Hydx folic acid & all the other pain relief as and when. I also have fibromyalgia and trochenteric bursitis in left hip, which is incredibly painful and means I can only walk about 50 meters slowly without being in excruciating pain that I cannot move. Had steroid jabs 3 weeks ago which helped a little at first but now I am back to pre-jab pain. Doc told me it needs to be done under ultra sound so it's being injected in the right area but found out today there is a 16 week waiting list!! I'm now beyond fed up. Depressed, feeling like a total waste of oxygen and clearly feeling very sorry for myself. I work full time but cannot manage to do anything else with my life so the hen night all my friends are going to on Friday is a no no for me , & I'm getting more and more isolated. So called friends don't seem to want to know if I can't go out and get drunk with them. I'm worried about where my mind is taking me. I'm 44 years old, married with 2 children aged 22 & 17. Any words of wisdom will be very much appreciated. X

4 Replies

  • Hi Emma,

    Welcome to this site and our diverse community.

    In answer to your question PACING know when to rest and when to do a little extra above your daily routines. What 'daily' things can be deligated to family members so that you can conserve your energies. Can the same be done at work... it might be worth approaching Access To Work to see if they can offer some kind of support to ease work pressures whilst still enabling you to work full time. I am currently engaging with them and am just in the process of enabling an assessor to go into my work place and assess what (if anything) they can help with - one thing that they have mentioned is providing a computer programme which will read what is on the screen and type to my voice this will ease eye strain and pain in my hands when typing. I don't know anyone else who has had Access To Work involvement so it is all new to me as well as new to my employer.

    Look for emotional support beyond family and friends, your GP can refer you to a therapist/counsellor if you think that may help in the long/short term (a lot of us use such support to help us on our journey). Your GP can also refer you to a pain clinic if you want.

    NRAS has a good help line and it is delivered using fellow RA sufferers who have been through similar so they can really empathise whilst giving practical advice/support.

    Some of us use mindfulness meditation to help us to cope with things and to conserve our energies.

    Diet can help and maybe it's time to filter through and see who your 'real' friends are ... They'll be there regardless and I have found some have surprisingly gone by the wayside whilst others who were not really in the fore before have shone through.

    All the best


  • It is difficult when pain determines what you can & can't do. I also have trochanteric bursitis so know just how it is but mine fortunately has reacted somewhat to the pain relief I have for my OA. Possibly asking for a pain relief review would help, if you RD is controlled?

    Are your friends aware why you can't go out as you used to? Maybe telling your closest one or the one who is most likely to understand & have her explain to the others will help. It's true some people just don't understand but sort of fortunately I was never a drinker so was a party girl without alcohol but I found once it was understood what made me want to sit rather be able to stand around chatting it was an ahh moment. I've 10 years on you but still enjoy going out with friends, maybe not as often but that's no bad thing!

    Also, is there any way you could reduce your work hours or some ask if some responsibilities could be shared? Much depends of your job as well but you know what may be possible. I know for some it isn't possible but if that is the case all I can suggest pacing yourself, it's terribly important not to do more than your RD will allow & to try to be in control of the disease rather than it controlling you. Could your children play more of a role at home? If they see you're struggling they may even be doing so but if there's any extra help that can be doled out that would be helpful & take the pressure off a bit. Rest when you can, housework will wait if that's an issue.

    Try not to be so hard on yourself. I appreciate it's difficult, I've been there but come through the other end when I admitted what I could & couldn't do anymore. I push myself to try sometimes but if I fail I no longer beat myself up about it.

    Oh & if you feel like shouting through frustration come on here, it helps to be in contact with others in a similar position & who know how things are.

    I hope this in some way helps & you receive lots more replies in how to cope. You'll get there but it may take a few adjustments:)

  • One of the most difficult things about having RA is having to accept that you have to do things differently.

    You have to think difficult thoughts like "What is more important to me: continuing to work or going out to a hen party and behaving badly for a short time"? and " How can I have some fun in life without... getting drunk... doing things spontaneously?"

    I've coped over the many years by altering what I do and gradually acquiring friends who do the same sort of things. I DO miss the carefree assumption that I can do this or that, but with planning, I can still have fun.

  • Hi Emma1970, I too work full time and cope with RA. I too work full time, and it certainly is a challenge to balance work and play. I try to conserve my energy during the week, so I can manage my work load, and I practice yoga three times a week, I find it helps me maintain flexibility, strength, and to some extent pain control. If I do not exercise, I actually hurt more. Yoga is my 'me' time.

    Work is my first priority as I have bills to pay, and support a dependent. My career is very important to me, I am lucky to have found a very professionally and personally rewarding career, albeit it is a very physical job. I am 46, and most of the medications I am on, dictate not to drink alcohol, but I do like to go out with my friends on occasion.

    You will probably have to take the 'bull by the horns' and call up a friend and suggest an outing that you can participate in. Many people who do not have RA, do not understand your needs and condition, which may change daily. I gave up my drinking days long ago, at some point it just became unappealing and was not enjoyable, now I call up a friend or two and make a 'date' for a coffee at a local cafe' and have a 'gab-fest', walk around the mall if it hurts to sit too long, or go out for lunch or dinner, even if its just for an hour or two.

    Im hoping your steroid injections kick in and you find some relief.

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