I don't understand its all so confusing?

I'm new to all this confusion Ijust don't get it.I don't even know what it is I don't get!

For years I have had so much pain here ther my poor feet have been swollen and painful for ever.Then about two years ago I started to get funny itchy lumps under my skin on my calves.Some days they pain of them was very very bad other days just itchy.Erythema nodosum I was told.Still have them as to this day.

Back and forward to Dr's labelled a moaner.Then a few months ago the pain in my wrists,thumbs and excruciating pain in my feet.Off I eventually went to the Rhemi tests Its a ',connective tissue disease ' SO is is Ra ? I ask er not sure at the mo were calling it a connective tissue disease ! We will give the same trearment and see how it goes.

I just can't get to grips with this I want my life back.Single mum, working 50 hours a week 3 dogs to walk.A house to run and bills to pay.Worked my botty off for 35 years ,don't do sick days etc.All these strange things happening to my body,dry dry drier than that mouth , voice keeps going awol.Keep forgetting the most basic of things like what day month is it.Feel ill shivery all the time ,no energy,horrid itchy red blobby legs and what looks like a dead persons feet.Feel depressed tearful for no reason.And if I'm honest scared.

Websites seem to deal with particular disease like Ra Lupus etc so WHO am I anymore,Whats going on,whats gonna happen to me next,and where do I fit Why am I not a RA patient or a Lupus patient.SO how do I fix it.What can I do.

7 Replies

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  • Hi jelly4toes.

    Sorry to hear that you are so ill. Also working too hard that you have no time to get well. You sound like you may be struggling emotionally. This is also a symptom of this horrid disease. I'd say take yourself to the doctor and get some decent pain relief. Pain leaves you feeling tired and exhausted. And you most certainly need a rest. Take some time off. There are no medals for heros. You need to look after yourself. Whatever your diagnosis. You most certainly need some help. Pain relief and rest is always a good place to start. Sending you hug to keep you strong. Carole

  • jell

    Why do you need a label,? you are welcome here and no matter what they call it you are obviously in pain, tired and sounds like you are fed up. An awful lot of us here know that feeling.

    I admire you, I know I couldn't work all those hours and cope with kids, dogs and house, and you are juggling all that whilst you are ill.

    You should be giving yourself a huge pat on the back for keeping up with this all these years.

    I felt very like this before I found out what was wrong with me cos I too worked and had the kids etc, but I knew there was something not right and I was so tired and exhausted that I woke up morning and could hardly move. I went to the Doctor who straight away luckily for me sent me to Rheumatology. They did loads of test and pressing me and squeezing my hands and eventually I did get a label of RA. But it has still taken over 18 month for them to "fix" me after lots more trial and error and pain and fatigue, forgetting things, and I know its not gonna go away but I'm learning slowly to cope with it better.

    I felt very low and depressed too, as you have just admitted, and I confided this in the doctor and he sent me to see a counsellor. I was so angry with him at the time as I didn't think I was depressed, but what it taught me after only a few weeks of talking was that i could cope and eventually the treatments and tests would show me what was wrong and what to do about it.

    I think you are very early on in some ways with your illness whatever it is called, and you need more time to find out causes and reasons , if there are any. Hang on in there as it will get better, they will find out more, they will be able to fix you, so don't be scared. Take a deep breath and as soon as you can , you know you should talk to the GP about how you feel. I know you think he sees you as a "moaner " in your words but if you are honest with him I'm sure he will respond well.

    Also maybe you should call in some favours from your friends and get some rest as you seem to be working yourself do the bone, and would one or two sick days really be so bad when you feel so tired? Give yourself permission to feel tired and sick if that's how you feel. I think you need to pamper yourself instead of running around for everyone else as you said for those 35 years.

    I hope you manage to get some sleep and rest tonight and maybe take tomorrow and Monday to rest and talk to your GP? We are here for you on this site. so blog away and ask loads of questions like you have tonight and this feeling of shock and worry will pass, honest, Sending you lots of hugs , (((( ))))) Axx

  • Hello Jelly4toes,

    This is a lovely, lovely answer from Allanah and I agree with every word she says. I do understand, however, that you feel the need to put a label on what you have. That way you can identify with it and with other people who have the same symptoms and find the means to support yourself through it. At times like this we want to reach out to people whom we completely trust will understand how we feel because they are going through the same themselves. The need to belong to a specific group can be very strong when you are uncertain about your future.

    You are not alone though. Even if your diagnosis turns out to be something other than RA - living with any auto-immune disorder brings with it specific emotions and problems which we all understand and can support each other through.

    We don't underestimate the shock of finding out something like this and the fear of losing the lifestyle and the future you had planned. The early months of diagnosis are very, very tough. Auto-immune disease is hard to diagnose and they can take a little while to get the right medications sorted out but do trust that they will do it and keep yourself informed of what the health professionals are doing.

    You sound a little like I was when first diagnosed. Independent, single mum, used to doing everything herself, meeting problems head on and dealing with them. You become so accustomed to being the one to 'fix' everything that it becomes doubly hard to accept that this is not something that you can control.

    Your job now is to keep the medical professionals informed about every symptom, emotional and physical so that they can direct you to the right diagnosis and also to do what you have already done which is to look for support from people who understand.

    I had a quick google for support groups for general auto-immune disorders and found this which may interest you.

    autoimmunity.co.uk/

    Good luck and stay in touch.

    Judy xx

  • Hi Jelly - I am so sorry that you've got so much to cope with just now. Allanah and Judy have both given you pretty brilliant replies so I have nothing to add apart from to say that I have a diagnosis of RA now but am still terribly confused because my symptoms often don't fit in at all and I seem to be acquiring lots of other conditions along the way - but actually all are so mild, including the RA currently, that I never know whether to mention them to my GP or my rheumy or not - sometimes I think I'm imagining it all and I've been too convincing and ended up on powerful drugs I shouldn't be taking. So confusion is the name of the autoimmune game and I think the best thing we can do is to just try to be as philosophical about it and simultaneously prioritise rest and push our medical practitioners as hard as we can for information and for help.

    In my own search for answers yesterday I stumbled on a page of a Lupus site where I read this and found it very interesting. I found the last sentence rather comforting for me in my present confusion - I hope it may help you a little too. Tilda xxx

    "Are people with lupus more likely to get other problems where the immune system attacks the body?

    The answer to this is yes. Anyone with one condition where the immune defence mechanism attacks the body (so-called autoimmunity) is prone to another one. We know this is the situation with all autoimmune diseases. For example, people with diabetes (where the body attacks its insulin making cells) are more likely than the general population to get rheumatoid arthritis or thyroid diseases.

    In general, if a patient has lupus combined with another autoimmune disease, the lupus itself tends to be less severe. In the same way, the other autoimmune disease, which can occur without lupus, tends to be milder. Correspondingly, doctors can get away with less powerful treatment in these ‘overlap’ or ‘mixed connective tissue’ disorders."

  • Hi Jell, All of the above members have said all there can be, great advise and commentary from each of them! "Connective Tissue Disease" is a term I haven't seen or heard for many years. It was the first diagnosis I was given over 30 years ago. My hubby and I were told, by an esteemed Rheumatologist, at Akron University, that he would give us this diagnosis, but it would define itself in the years to come, as I got older. He did recommend that I try conserving my strength and energy in preparation for what lay ahead. However, we had just bought our family home, had 4 little boys, and I had to work to help the financial situation. So, I just trudged on, lived with whatever was happening, believing this was just my lot in life. I remember getting home from work, laying on the bed, thinking, how can anyone hurt this bad, felt like I had been beaten with a crowbar. Finally mentioned these feeliongs to my family doctor and he immediately got busy. Was diagnosed with Psoriatic Arthritis, and later, also RA. Now, with MTX, Leflunomide and Simponi biologic, I am in pretty good shape.

    My advice, ok to be patiant and not need a defining name, but still report continuously, what is happening and how you feel. There are many anti-inflammatory drugs used for various auito-immune diseases, ask about them. All the best, Loretxxx

  • You could try thinking of "connective tissue disease" as a proper diagnosis. It actually is, in a lot of ways because it will point the rheumatologist to a treatment plan for you, and does describe quite well what is going on in your body. It also means that you aren't so likely to end up with a "wrong" diagnosis right now. If you want to understand more, you could ask your rheumatologist to tell you which of the connective tissue diseases he is thinking it might be.

    In the meantime, just joint whatever online groups that seem to make sense - if you find folk who are going through the same kind of stuff as you, whatever their disease label, then it will help. I've been a member of quite a number of different groups over the years, and when one stops being useful, I just look out for another. I even joined an MS group for a while, even though I don't have MS, because I do have some similar neuro problems.

  • I do hope that the great replies you've had have helped you a bit, as I well remember how messed up I was at the start. Just to add that you can also have more than one label....so connective tissue disease is a broad category and in time the docs will be able to identify which particular one you have. So yes I've been diagnosed as having RA, but I go to the connective tissue clinic. But you will get your life back, just hang on in there as it does take time.

    Take care. Polly

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