despair

spacey

morning,
well as the title says i just despair. I have enthesitis, hypermobilty joint syndrome and myofascial apin syndrome. My pain is getting to the point now where I am crying, down alot and its having a huge impact on my daily activities( I am 35 and a mum of 2 little ones). I have doubled my celbrex to 400 mg and take amytriptiline at night aswelll as paracetamol reguarly. I went to my gp to ask for help with my pain control but he was reluctant to interfere with rheumatlogist so told me to take paracentamol as in my case I will never achieve pain free- helpful! I should also add that I cant take coedine, muscle relaxants or morphine reguarly as for me it causes episodes of illeus where the bowel goes to sleep which in my case usually means a week or two in hospital really poorly so I do undwerstand I am a tricky case. I have now rung the rheumatology nurse who off the top of her head cant think of any way to help further but will discuss with rheumatlogist - not what I had hoped for. I dont expect to be pain free but a bit of relief to take the edge of sometimes would really help. I work reduced hours as it is but by the end of my shift just am in tears with the pain -Justdontknow what to do, is this it, how it will be for the rest of my life??? .

elnafinn

Hi Spacey

I am so sorry to read your posting. You have every reason to be feeling how you do.

Let's hope the rheumi nurse comes back with some ideas for you, once she has spoken with the rheumy. I am wondering when your next appiontment is.... perhaps you should take what you have written to us, along with you to show them how you are feeling. With two young children to look after and a job too, that is a lot to cope with, let alone with health problems added and only being able to take a few meds to combat it.

Sending you over some gentle hugs and I do hope that you feel a little better soon and hear from the nurse.

Look after yourself,

Elna x

valval

hi hope they can come up with something have no ideas sorry leaving ((())) to help you through val

cakegirl

Although I don't have an answer for you I just wanted to let you know I am thinking of you. I too am a 38 yr old Mum of two and appreciate how hard things can be and that's for people without pain issues going on.

Do you have a partner ? Just wondering if you can maybe have a warm bath and get yourself some rest in bed early tonight.

Can you be signed off work for a couple of weeks maybe, take a bit of pressure off you ? Although I must admit whenever, on the very rare occasion I did that i ended up feeling worse with guilt !!

Awwww, big hugs xxxxxx

stickywicket

I do hope the rheumatologist will come up with something, spacey. Young children and a job are difficult at the best of times and these are clearly not the best of times for you.

CJHunter

Hiya, can you ask your G.P for a referal to pain clinic or reummy. They will have a better idea of what u can or cant take.

Good luck.

((((()))))

spacey

thanks all, my rheumatology nurse telephoned back after a chat with the rheumatologist and they have suggested steriod injections. My symptoms are always improved by steroids when I have taken them to control my colitis and vomiting in my last pregnancy so am hopeful for improvement. As I said to the nurse I am so grateful to them for ringing me back and that they are willing to try to help not to just write me off as I feel my GP did. Feeling a bit more postive today, thanks againx

julie47

Morning spacey

I am sorry that you felt so very low but i am pleased that today you feel a little more positive and that the rhummy nurse rang you back with the suggestion of steroid injections.

I hope you get them quickly and you start to feel the benefit soon

Love Juliepf x

frogmorton

Hi Spacey

I am replying on here on behalf of myself and cRIS WHO IS STILL PRETTY ROUGH AND CAN'T SEE WELL ENOUGH ATM. (SOrry caps lock).....

Now we are both very pleased to see you are finally getting some help.

Cris says....see! you're not invisible!!

Hope you have a good weekend

Love

Toni and Cris skezier

spacey

thanks, hope you are getting on ok cris x
I had my steroid injection and met the rheumatology nurse for the first time yesterday. She was everso nice and talked me through the plan. If the steroid injection works (should do in only 2 days!) we will know it is the inflammatory enthesitis playing up and I will then start on the disease modifying medication to control it. If not then we know its the hypermobility joint syndrome making a fuss and again they will address this. Either way I am to ring her in 6 weeks with a update and she will take it from there.
I dont know if I am just reallly hoping it will help but 24 hours on I think the stiffness has lessened so fingers crossed a lot!
I messaged at a really low point and am so grateful to this forum so thanks a million xxxx

skezier

Hi Spacey,

Glad your feeling a bit more positive and so hope the jab works in terms of pain and stiffness but flower I don't know which out come would be easier for you. I guess if its inflammatory they can treat it easier for control?

Flower you hang in there and don't forget you can borrow that viability cloak just any time you need! Keep in touch and let us know how you getting on cus we worry. ((((( ))))) Cris who is getting there as well xx

elnafinn

Hugs to you, I am so pleased you are feeling more positive and you have been taken under the wing of the rheumy nurse. It makes all the difference to know someone in the medical profession cares, doesn't it? I have read on this forum that many others really rate the rheumy nurses and it is so good to hear.

Elna x

tjt6768

Hi Spacey. Just wondered how the injections were working?
Hope they do some good.

Think mine are starting to settle the knees. Hard to tell today as I've overdone things a little..
Fingers crossed for the both of us mi dear..

valval

hi just popped in to see how it going do not do as tony doing and over do things it is so tempting so rest when you can and let us know how you are getting on val

spacey

thanks everyone I am doing well thanks. It hasnt taken away all of the pain and the ache but it has helped with the stiffness and I havnt gotten myself in a tiz with the pain sice the injections. The test for me is after work and a 10 minute bus journey I would struggle to get up off my seat and walk home but have done 2 shifts since the injections and that journey home has gotten much easier on me. I said to hubby after so long of being so sore to feel a little better feels very strange and not quite like myself although defo not complaining. Yesterday I shut my eyes for 5 minutes and woke 3 hours later so still so very tired but dont want to ask too much of the steroids that they get the hump and clear off!! Apparently they work for 2 to 10 weeks and Iam dreading the day when I wake up and feel like my old self but am grateful for the time I have at the moment. Thanks again everyone I am so grateful for your support xxx