All time low!!

Hi all!!

I have been experiencing some new pain on my spinal and a hump I have at the top of my neck at the back.

All this cause a college said I was lying, in seriously fed up now having problems sleeping my GP has upped my dihydrocodeine which am taking for my kidney disease. Mind college is going to get one heck of a shock when they see all the information I have from me email members if staff stating about my FMA.

Found out my GP is sending me back to see rehumtology who dignosed me with FMA and hypermobility then discharged me that same day. As walking is seriously painful, spent the day in my nightie and dressgown stood to do some dishes and had to stop cause the pain in my lower back was causing discomfort.

I'm currently lying in bed now waiting for my pain killers to kick in and the pain is getting worse, does anyone suffers from this pain in neck/spine??

I'm not sure what rehumtology can do for me, however if in still in this pain when the appointment comes thru I'm using the NHS ambulance cause I highly dout I can walk for the bus and walk there and back as nothing seems to help, bar resting my head on something to take the pain away :/

I'm not sure if rehumtology will allow me to have a wheelchair? Has anyone asked there consultant about this? Cause if I have to I will cry because I hate it when someone tells you it's not that bad when they don't experience the pain you go through and 8 times out of 10 don't say anything and just get on about it.

Sorry to say depressed but I don't have many people to speak to my sister thinks I should speak to a CBT (no idea who that is, something to do how we feel and how to change your mind about yourself I think)

Night x

17 Replies

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  • I'm sorry you're in so much pain. I hope you get some sleep.

    regards,

    sandra.

  • Not really but I usually nap if I have to x

  • Hi

    Although I don't have pain in the same way as you describe in neck/spine i can empathise with you. I had CBT for anxiety and depression and it really helped. It helps to break out of thought processes that make you feel worse and teaches you to be aware of triggers and how you might avoid them.

    As for going back to the rheumatologist they may review the medications you're on. They might recommend pain management course (which I have also done). If you are not happy with seeing the same rheumatologist you can ask to see another one.

    If you feel you need the aid of a wheelchair you should definitely ask I have a friend who has just been given a wheelchair However I realise different hospital trust will be different. Do you have someone who could go with you for support? If you need to talk I will always listen. I have found myself lost and had nobody to talk to in the past and it was definitely one of the reasons i was as bad as i was. Hope this is of some help. Nat.xxx

  • Thanks Nat I will look into it x

  • Morning did you manage to get any sleep? I hope you have a better day today try and be as calm as you can the more energy use being upset by it the less you have to cope with the pain.

    It is true the more aggravated we become the worse the pain.

    If you really feel you need a wheel chair ask but dont give up and use one till all else fails keep trying and battling on.

    As Nat said talk to someone it is so important and you will feel better, you can always post on here and have a vent.

    Have a better day

    xgins

  • No I had a bad tummy all night, I think it's cause of my dihydrocodeine I took I don't normally take two and I've just been sick. Feel like I could sleep for a week now. I find when I feel sick I dream that I'm somewhere with a bad tummy. Now I'm freezing I'm shaking and have goosebumps, don't want to move incase I'm sick again :(

  • Hi Gins,

    I'm feeling better now the dihydrocodeine is out of my system. I went to sleep sitting up and ended up lying on my side, just catching up on sleep. Lil reluctant to move incase it starts to hurt again. But I'm 100% I was ill because I took 2 dihydrocodeine so I wont be doing that again.

    X

  • Hi Susan,

    CBT is cognitive behavioural therapy. I saw a clinical psychologist for about 6 months earlier this year and found it very useful. They help you to recognise when you have negative thoughts and then help you to change how you react to them, eg. trying to prevent you going into a downward spiral where you feel worse. The stuff you're told isn't rocket science ;) but provides you with different ways to view things and strategies to use when you're feeling down. I picked out the strategies that worked for me and have been a lot better mentally. Might be worth a try if possible.

    Have you shown your dr the hump? I have one and showed my dr a few months ago as the pain was so awful there. I hadn't shown him before... oops! I had thought it was dowagers hump (having been told that 10 years ago), which can be due to kyphosis (curvature of cervical spine). However, he thought it was buffaloes hump (yep, another flattering description), which he was concerned could be due to Cushing's disease. Thankfully the X-rays proved it wasn't dowagers hump and further testing showed it wasn't Cushing's either. It seems it's due to me putting on weight and should go away as I lose weight. Just thinking about my own experience, it may be useful for you to get it checked out if you haven't already :)

    Re your the neck/shoulder pain. I have it so bad at times it is very hard to cope, especially when it goes into spasm and I can't move. After all the above tests, my dr has said it is probably down to the fibromyalgia, although it seems I have osteoarthritis in my cervical spine too (yay!). I have had problems since my early twenties with my neck and I guess the fibromyalgia is exacerbating it. I have adjusted the way I do things to reduce the chance of having severe pain, eg. using a computer kills me and so if you use one at work, make sure you have as much equipment as poss to help you - proper chair, computer screen at correct height, trackball instead of mouse... there are lots of things that can help. I worked at a university and they had a department specifically to help people with disabilities get help where needed and the right equipment. You must take breaks too. Easier said than done I know, but when I have prolonged use of the computer it's hellish. I can't work now, and because I have an iPad I use my computer very rarely now because of the pain it causes.

    Anyway, I don't know if any of the above is useful. I hope you are able to get some relief from your pain soon. It really does grind you down when it's continuous.

    Pip xx

  • Hi pip,

    Thanks for the message I am looking into getting a trackball for my laptop which may help a little.

    I have been told by a physio that the problem I have with my neck is "dowagers hump".

    I took two dihydrocodeine last night and thinking that is what made me have a upset tummy today. I thought it was settling but iv just coughed and the pain is back :( going from my tummy to my chest :(

    X

  • Hi Susan, the physio may well be right that a hump on the back is known as a dowager's hump, but the reality is that such a hump is normally found in much older women and is caused by osteoporosis, someone of your age should most certainly not be experiencing that without finding out exactly what is going on. Are you bent over? or is there a lump on your neck spine, that you can feel ? If so this could be a joint out of place, but you definitely need to get some proper advice as to the cause, whichever way it is.

    By the way, taking dihydrocodeine on an empty tummy isn't a great idea, so do try just to eat a little something, like dry toast or a biscuit before you attempt to take any more, they can cause really unpleasant tummy things, I really would suggest you get in touch with a medic pretty soon, and do try to sip some water, preferably with a bit of salt and sugar added, you may be dehydrated after being so sick and the water with salt (just a pinch) and sugar (half a teaspoon) with help rehydrate you. Do let us know how you are .

    Sending healing vibes your way

    Foggy x

  • I'm not bent over, I can feet it at the top of my spine. It's right in between my shoulder blades. I have notices the pain goes into my right shoulder and lil and the only thing that comes to mind is a massage I had when on holiday at the Turkish bath. Or that I had a MRI last week and had to put my arms above my head which hurt a lot but couldn't tell them about my FMA as I was having this scan for an accident 2 year ago and I had the accident b4 I was diagnosed, so haven't told them about FMA.

    X

  • That's actually good Susan, not telling them about the Fibro cos then they aren't going to fob you off. have you had the results of the MRI yet? Would they have looked at that area beaten your shoulder on the MRI ? Sorry to keep asking questions, it must be so horrid for you, you put up with so much. The massage you had should have helped one would have hoped, not caused more probs, oh dear. I really hope you can get on top of the pain and get to what is actually causing all this very soon.

    More positive vibes coming your way

    Foggy x

  • Not yet there two weeks after my appointment so a notice said on the wall in the hospital.

    I don't mind the questions foggy :)

    I had the MRI scan on my left hip and right side of my neck as when I had the accident I had someone facing me on the bus and put my leg down firmly to stop myself from colliding into the passenger in front of me, I also must have stiffened my own body which caused the whiplash.

    I just get on with it if I'm honest, when I'm having a good time and the pain is manageable I just continue with life and when it's like this I don't really leave the house unless its necessary, I'm just in my flat today actually I'm in bed debating when to get out.

    But half the time I forget about the medical conditions I have apart from FMA I have PCOS, polycystic kidney disease (I will need dialysis and a kidney transplant when I'm older, iv just been put on water tablets and dihydrocodeine for kidney pain), I'm hearing impaired and awaiting my hearing dog.

    I'm currently a lil apprehensive for when I see the rheumatologist as I'm not sure if they will agree on allowing me a wheelchair assessment.

    Xx

  • Oh dear, what a lot to deal with you poor love. I really hope that the kidney problem is overcome-able, being more than stupid I thought PCOS was Polycystic ovary syndrome, I learn new things every day - or do you mean you have both, Foggy is so very easily muddled !! I do hope you manage to get your wheelchair assessment sorted, sounds like you need all the help you can get.

    Sending more positive healing thoughts your way........

    Take great care

    Foggy x

  • Hi foggy,

    PCOS, is polycystic ovary syndrome.

    It's okay, the kidney disease is hereditary my sister and a lot of my family have it.

    I see my specialist every 6 months.

    Thanks again

    Foggy

    Xx

  • Oh my word, you poor love, you have been dealt a really rough hand haven't you, Im so sorry. I have had kidney stones which is horrid but facing dialysis and a transplant must be very scary, and on top of PCOS and Fibro and other things........... I wish I could take some of that load from you, it must be hard, very hard to cope with. Oh dear, I just want to give you a big hug ((( )) and wish it all away for you.

    If I can help in any way, any way at all, do please feel free to message me, you will be in my thoughts a lot.

    More positive healing vibes coming your way Susan .

    Foggy xx

  • Thanks foggy :)) xxx

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