Hi.here goes.been rumotoligist... Here's the letter.....help.please x

Undifferentiated connective tissue disease. Probable lupus.+/- antiphospholipid antibody syndrome....why me..my back.bones are gone..very painfully.I've osteoarthritis in back..started felling unwell year ago..muscles hurts to tipe lots....can't go outta house.feel so lost...can anyone help..some might knew me from the pain bit on here..oh my fingers are well swollen.I've had very low white blood platelets.. Could sleep for ever..got a injection in bum??my sore mouth. At back little better.back little better.oh I've malar rash??Raynaud's too???my uncle drove me to Newcastle has was a re look at my back.was to have a op on back!!he took one look at a letter I never even had back .said oh you need to see rumotoligist again first...w.huy... I've been too %2 before.....help I am crying..am I I'll!!!!!!!!xxx

13 Replies

  • You don't say whether you've been put on any medication for your undifferentiated connective tissue disease or the possible APS. You sound as if you haven't - why not? Once the medication kicked in you'll start feeling better, although we will all live with this disease for the rest of our lives at different levels. Your rheumatologist needs to prescribe medication - if he hasn't, contact him/her or their nurse and ask for medication.

    No point asking why you - life is what it is, you just need to focus on getting better quickly now. I know it is a shock, particularly when you're in pain - but you need to focus and get those meds ASAP.

    Be strong, your body needs it.

  • Hi.purpletop. I've just got my letter..she gave me a steroid jab.have to go back in march...thank you.can't believe not many have adviced me....I've been very poorly for few year.but worse last few month...my fingers are swollen. I've a hole in my hand.bones.well like swollen bone sticking out my finger joints.I don't understand so the dizziness. Mind lose.pains.can write letter of simptons...

  • P.s.purpletop. no meds yet.had my bloods done when there.just got this letter.

  • For a start stop crying. This wont help. You have got to think positive. We've all been there. Dont feel sorry for yourself and just think of all those sick children who cant do anything about their illness i.e. cancer. Now get it in perspective. Yep we all are in agony, yep our fingers are swollen, yep we are so tired that sometimes we cant get our head off the pillow let alone tackle the stairs but you know what today is cold and a lovely sunny day. We are alive and whether we want lupus/aps or whatever, we have got it and cant run from it. Once youve accepted it it will get easier to cope with.

    Sorry to come down so hard but please look forward little steps at a time please as big ones make us ache even more. Your depressed, bless you, you can live with this now make a concerted effort to try.

    Regards Diane

  • Hi.diane 1428.. I don't feel sorry for my self..I've been through hell last few year.lost dad.antie. granda. My other one who's 91... One of our few last war hero's. Is on he's death bed.I've 2 austic boys....no time to feel soz...just didn't understand?? This??that's all..??feels like no one seems to give advice now ???it was a shock to get this letter...

  • Louise,

    We all feel like you do at times. We cry alone, we pray in silence. No one can answer as to why we all, on this forum, were struck down. My Lupus is genetic. My grandmother, who died before I was born, most likely had it. They tell me she had a cerebral hemmorage. She was 48. Then my Dad was diagnosed with Lupus and he died at age 67. I am now 71 - and I have everything you describe. I ask "why me" often. I have a brother in law who is approaching 90, and his wife, approaching 82. They don't have anything major....just chronic stuff that comes with age. While I take 14 pills a day and use an inhaler and Restasis for my Sjogren's, and my face has skin missing on one cheek bone because of Scleroderma, and my hands turn white and purple because of the Raynaud's, and I have to take Coumadin for life because I almost died from bloos clots, and my hair falls out because of all the meds I take, I STILL push my body to play tennis 4 days a week. I don't LOOK sick! When people tell me how "lucky I am to be thin," I laugh. Lucky??? I have so many diseases that when I go to a doctor, I take a computer list with me because my hand hurts from writing down all the various conditions I have and the meds I take. No one can advise you to fight! That has to come from within you. I know life is hard - we all have and had losses. We all lost someone dear to us that we loved. And many of us have children that we don't see or talk to, and grandkids who probably won't even know we existed. But....we try and push for our own survival and well being. I f you have just one good friend that you can talk to - and who will listen and not be judgmental, then talk to her or him. Talking helps - and that's why WE are here. Healthy people who don't have all these various diseases and who have a good life and good relationships are not on this forum. WE are..for a reason. To let YOU know that WE do understand!!!!! We all have sicknesses and we all take meds. And..we all feel like punching a wall at times. Read this post a few times.....I hope it helped. Remember Louise- WE got your back!!!

  • It is so hard to deal with this type of thing even when you have nothing else to consider. 2 autistic boys and a lot of sadness in your world will make it worse, however, I believe you some help from the medical profession to make you more able to look after yourself and your sons. Making a concerted effort to try when you are so desperate is near impossible but possible - It is not the end! you do learn to live with it and indeed know your limits. Keep on going - it took me years to get my diagnosis - don't give up XXXX

  • Ok, now you've had the melt down - understandable, we all have them - what are you going to do to help yourself? Make an appointment with your GP to discuss the letter you got from rheumatology. Hopefully they will be able to explain it in clear terms. It's all very well saying, 'Think about the dying, starving children.' I don't think you are belittling their plight by saying you also have a problem.

    Most of us here are in situations we wouldn't choose but we can't really change that. We can take the meds, build good relationships with our doctors and nurses, make lifestyle choices, we can still choose how we react to our circumstances.

  • Hi Louiseamos

    It is always a bit of a shock to realise you have something like this but looking on the bright side at least they took you seriously. Was this your first appointment with this doctor. She has given you a steroid injection and will be waiting to see what effect it has on your body. It should dampen down some of the inflammation and give you a little ease.

    It's not the end of the world but it does take some time to get used too and to realise to cope you have to adjust what and how we do things. It also depends on your outlook. At this point you are coming to terms with what you have been told and there will be few different emotions to come out still. You will cry, you will get angry and you will cope.

    I'm not sure where you go to see your rheumatologist but I'm sure she will start you on meds, probably plaquenil and possibly something else.

    Keep using this site. When I was first diagnosed I found a lot of support from everyone on this site. I didn't always write on it but reading what others are going through and what they say does help.

    Have your cry but then use it to clear your mind and make the most of life xx

  • What is undifferentiated connective tissue disease xx ?

  • Hi I don't come on here very often but ,I was diagnosed in June then they said initially i had U C D T then changed it to M C T D ,I like you have felt very lost and alone last week I got told I have primary sjorgrens ,fibromayalgia ,raynaulds , gilberts , pysorisis ,reactive artherist , and am now undergoing test because my glands in my neck are infected and I have bowel issues and being checked for celiac's and thyroid issues , I take folic acid ,duloxtine ,hydrocoquinne and other drugs when my tummy issues kick in ,the thing that has helped me the most out side of the support I have had from the fibro forum on here has been a pain the pain and fatigue clinic ,it has helped me learn to pace ,chill , and except ,fretting about how things are makes things impossible I don't think straight ,I feel sorry for myself , and I get resentful all these feeling are negitive to my well being both physically and mentally , I live alone I have 3 children who live as far away as Japan at moment the nearest is 5 hour by train , I have wonderful friends who on bad days cook and drive me to appointments and shop for me ,and to my complete surprise after being single for 8 years after 25 years of Marrage ,I am in a relationship because I am not struggling to work and be well anymore, I have excepted ,it hasn't been an easy journey but it is possible to be happy again , please stop crying my doctor told me a year ago to be kind and gentle with myself it was the thing that made me stop fighting myself ,please stop and rest warm baths gentle walks if you can manage it on a good day and you will have them ,you have the right to be angry but not at the cost of you ,so be kind be gentle to you rest rest and more rest at moment ,don't push it ! If you want to find me on here any time I usualy pop up on fibro site as there is a lot of laughter on that forum and it helps me keep smiling even on a bad day chin up my love you will be ok

    Christina x

  • Hi.shadows- walker... Thanks. Really.I am going back to rumotoligist next week..what they will do??more tests .lung and scans it says...I've had more scans on my back..this is the 3 rd rumotoligist I've seen..no one would listen..my fingers are swollen..so think they listened. She was lovely.don't knew what's happening to me..feel like my muscles are wasting away?? I've lumbs on some fingers.. I've also got purple feet.fingers.my skin goes weriod...I've lost 2 bablies. Don't knew what the injection did they gave me few months ago???did help fingers.knee pain.back no.I have bowel props too...I've constant sore troutht can't spell!!!I knew its took aged sorry..just no one answered me at first so knoked off .....I've suffered server migrarane too is thisnormal xxxxx.....wwhat's fribo..or have l not got now ??

  • Hi sorry took so long to answer but Internet down :( joys of living rural , hi we seem to have all the same symptoms just about except the babies ,I was told at 17 I shouldn't or would have trouble on that front but I was blessed ,with 3 and lost one , fibromyalgia is what I call fibro and that's the group I go to on this the most ,I also am part of the arthritis ans raynaulds sites but tend just to read those to , the fibro site has helped so much with the helplessness and loneliness nothing against ant of the others but I need laughter ,I have on days as you so much pain and fatigue that I don't no which way to turn. And that site for me works wonders , they are a wonderful group of people with other conditions on the whole but keep fighting and have been at it longer and if they don't no the answers that day they find them ,keep your chin up things will settle it just takes time and are conditions are complicated try to stop stressing about it as that dies seem to help me just rest as much as you can you will get the help eventually it unfortunately takes time ,we are 2 of many out there but I count my blessings in that I found this site by accident last February/March and it has kept me sane ,do ask about pain and fatigue clinics as they will help if you go in with an open mind xx

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