Feeling abandoned

Hi I don't think I've posted on here before but I am so low today I could do with some advice.

I have MCTD and my Rheumatologist also thinks I have fibromyalgia. I went to see her yesterday and the consultant I saw (not mine as she was off) said it is fibro as my joints are mega swollen but they are painful. I can't take amitryptiline as I need to leave for work at 6:30am and that means a 45 mile drive for me and the amitryptiline left me feeling to woozy to feel safe to drive. So she basically said there is nothing else they can do for me.

I have to keep taking the plaquenil and methotrexate for my MCTD and the naproxen and tramadol for the pain.

My OH saw this as positive as it's not the MCTD. To me it sounds like a sentence to live in constant pain. I've had enough of it all. I work 4 days a week in a stressful IT environment and also have a home to run and as the mum of the family almost everything is left to me to do.

I'm fed up with being in constant pain and not being able to focus properly at anything. My work means I need to juggle lots of different things and I struggle to do that these days. I've even missed a few important things and ended up in trouble.

The consultant said I'm obviously not sleeping properly. I don't feel that's true. I fall asleep within minutes of getting to bed and don't stir until early the following morning when the alarm goes off.

What does everyone else do to cope/manage these symptoms?

16 Replies

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  • Feeling for you SuzyB I am in the process of confirmation of diagnosis by rhuemy and I too work fulltime in a demanding job, have no help at home and am running on empty. I have not been given anything for pain or sleep problems and I am just barely coping with the pain levels by self medicatring with paracetamol when the pain gets to the point I want to vomit.I have always been a 'coper' but I am starting to unravel so I have no idea how you are doing it if you have small children. The sleeping is that apparently you never get out of REM so you never get that deep restful sleep so are consatntly fatigued.

  • I don't have small children one is almost 21 she's left home but stll causes stress, the other two are still at home they are 19 and 16. But they are typical teenagers. I have been 'googling' this morning and have found a specialist hospital in Bath. I may see if my GP will refer me but I'm not going to hold my breath.

    It seems to me that amitryptiline isn't the only drug they could try. I take naproxen and tramadol for the pain but they don't always work.

  • Hi SuzyB -- good to hear from you. (as they say a "problem shared is a problem halved"!) It sounds to me that you have a lot of stress in your life both at work and home and it will be this that is increasing your "fibro" symptoms. I think that although this may be difficult for you to do you are going to have find ways of lowering this stress. At work are you being asked to do more than you have time for? Can you pass some of the workload onto colleagues? Or speak to your manager if you feel that they are asking you to do too much. At home (you do not say what ages your children -- but they often enjoy helping to prepare food) can you ask your family to help out with some of the tasks? Especially since you work 4 days (are you able to reduce your hours maybe) and you can ask your partner to "help out" with some of the domestic chores. It is important that you try and arrange to get some "me time" for yourself to relax -- maybe go to a gentle yoga class (which I do). I only work 12 hours per week and I find that quite a challenge. The hardest part of learning to live with Fibro is learning to "pace" yourself and don't overdo things -- this is really hard to do since you have probably got used to being able to do everything!! I also sleep really well at night (some are not as lucky as us) -- but I still often get the lapses in concentration and tiredness during the daytime. Make sure you eat healthily and regularly. To help you with "pacing" their is a great booklet you can print off on paintoolkit.org which I have found helpful. Good luck xx

  • The link is brilliant thanks for that makes helpful reading may be it could be high lighted on our front page . Pacing is so important xgins

  • Thanks Phlebo. I have constantly asked my family to help out more but so far it seems to fall on deaf ears. I'm also currently studying to train as a reflexologist. The plus side to this is that I get a reflexology treatment each week.

    I have already reduced my hours to 4 days a week. Work won't consider reducing those hours any more. Yes they do pile the work on. The one word I seem unable to say to anyone is no. I'm rubbish at it and I know I need to get better.

  • I saw the occupational health through work, which was a bit of a relief as they advised the company on things they could do to support me, I was upset and shocked but I think that it may have helped that in resonse to the standard report he advised them that I would be considered to have a disability by any tribunal not that this would have been an issue. I have to say that the organisation is a very supportive one.

  • Forgot to say, I fall asleep in an instant sometimes and can sometimes sleep right through but an important thing to remember, is just because you sleep doesn't mean you are getting restorative sleep.

    I found taking my partner along to appointments where possible and getting them to read about it helped. I also know that in the beginning I hid just how bad it was from people who love me because I didn't want them upset. I no longer go off and hide in the loo, or grit my teeth until I break out in a sweat, or make excuses to avoid situations and that almost feels liberating. Honesty is important because I think in hiding my limitations to others I was preventing my self from acknowledging my limitations and finally from learning to live within them as best as I can.

  • Hello Suzy, my goodness you have a lot of responsibility. How on earth do you manage it all is my comment. You sound like a marvel! You need to really take stock of everything and see where there are corners to clip if possible. I know this isn't going to be easy, but for your sanity, energy levels, pain levels and general well being i think something's going to have to give.

    Phlebo mentions some really good suggestions in her post. Could hubby help you out a bit perhaps, taking some of the load off you would make a real difference. If you both work, that's only fair these days. The woman doesn't have to be lumbered with it all like years ago, the female/male divide has narrowed considerably.

    Could you reduce your hours maybe - bear in mind and this isn't guaranteed, that there may come a time with your Fibro when you have to reduce your hours. I never thought I would have to, but in the end I had to stop working altogether. You don't want to burn yourself out like I did. It's a consideration.

    I know you say you have reduced your hours already and your work won't consider reducing your hours any more, do they know the strain you are under and your illnesses, that's not a very sympathetic or employee supportive stance to take from their point of view.

    Do you have Occupational Health at work, if you do it might be worth having a chat with them. Your work really need to be more supportive and understanding of your situation. Have you been off sick for a while on SSP - when you return your employers have to consider lighter duties if you have a bona fide illness and of course all of this would be verified by your GP on your sick notes. You cannot be thrown back in at the deep end with an illness like Fibromyalgia which as you know can be very debilitating. Have a chat with your GP about how you are struggling, you may need some time off if it becomes too much for you to cope with.

    The problem with asking your family for help and it falling on deaf ears is because you are still upright and doing everything so they psychologically think there is no need to help you. Families (and this is no detriment to them) think with their eyes but they don't really see, as long as you are standing and still charging off to work, looking after the home and the children and studying your reflexology - my goodness I am exhausted just typing that list!

    I hope these suggestions are of some help to you. We do understand, many of us including myself have been in the same position at some point, the eternal juggle! Take care and please if there's anything we can do to help or support you in any way, please just ask. We are always here for you as we are for everyone. :)

    (((hug))) xxx

  • Many thanks all. I will certainly try occupational health as we do have a team here.

  • Hi SuzyB again! -- thanks for posting the link to the ME article in the Telegraph yesterday. Your kids are similar ages to mine (22 -left home,- she also causes stress, 20 - at uni - he is an ever bigger stress and 15 - still at home, but the easiest one to deal with) - but like you say they cause different kinds of "problems" as they get older (I thought things would get easier as they got older!!) My hubby works very long hours and is away a lot (away all this week) is unable (or maybe won't!!) to cook, wash ,iron etc. I try and keep active (walk the dog, swim,yoga) and amazingly I have discovered that an occasional session of reflexology works wonders!! (if you were near me I would be definitely get a reflex session with you!) Once you have finished your training would you maybe consider leaving your stressful IT job? -- doing reflexology would mean you could work hours to suit yourself and not having to travel so far-- you could even get your clients to come to your home. If your GP will not refer you to the specialist place in Bath then make an appt to see a different GP. I also find it difficult to say "NO" but you have to be firm with yourself for your health's sake. I have learnt to say enough's enough at work and nobody thinks anything worse of me! Basically you have to try putting your self FIRST for a change. Good luck xx

  • Great advice there Phlebo! If your GP isn't being supportive to you Suzy, try to see another Doctor at your practice. It makes such a difference knowing our GP's support us and that they understand.

  • I don't think putting yourself first comes easy to any of us who are Mums. Generally my GP is pretty good. I'll see what he says and will let you know.

  • And yes the plan is to qualify as a rheumatologist in June next year and work from home. I have a room set up ready to go. Then as you said I can do as much or as little work as I feel able to cope with. OH not to impressed as we'll lose my IT salary but we are lucky enough that we can afford to. My OH also travels a lot for work. The last trip was a month away and I don't think he understands the pressure that puts on me. Even simple things like a broken curtain rail seem like a mountain when he's not around. He's back now until the end of Jan then away for a week

  • I know there is fibromyalgia swelling but it does not come from the joints or affect the joints as arthritis does. Fibromyalgia swelling is something I get mainly around the hands and feet and it is very rare it turns red(which I am thankful for), it has done in the past, but rarely. I have to be careful as I suffer with water retention so they have to be sure which it is, fibro swelling or water retention before treating. You can also suffer with the feeling that bits of you are swollen too, I hate that, feeling like I have blown up like a balloon even though I haven't. I find my hands or feet will swell up when I am faced with something I feel I cannot deal with, stress, anxiety, that sort of thing. My feet are swollen today as I have had to deal with the fact that my daughter has yet another infection, so in retaliation for me worrying, my feet swell up and join the party. So the fact the specialist has said it is arthritis BECAUSE your joints are mega swollen surprises me. I am wondering what your specialist is thinking to associate the joints being swollen as a definite indicator of fibromyalgia. So now I am baffled as I remember being diagnosed and told if the joints are effected then the fibro is NOT doing it. Do not take this as me being rude, I am just surprised by it. I can see you are having a really tough time of it and being in pain never gets any easier for any of us, but somehow we seem to pull together on here and try and be there for one another. I do hope things improve for you soon hun, I really do xxxxx

  • So the fact the specialist has said it is arthritis BECAUSE your joints are mega swollen surprises me, should read the fact the specialist has said it is Fibromyalgia BECAUSE etc etc

  • Sorry it should have read because my joints AREN'T mega swollen.... Struggling to stay focused enough to even type what I mean....

    There is some inflamaition as my CRP is at 6.5 and my ESR is 11.2 not mega high I know but it is there and she couldn't explain why intra-muscular steroid shots help. But hey-ho. I've run out of energy to argue with them. 8 weeks ago I was told they thought I had bladder cancer as there were lumps in my bladder found during a cystoscopy for blood in my urine. I went for a repeat cystoscopy 6 weeks later and the lumps had vanished. No-one can explain that one either.

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