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Can anybody shed any light on this??

Posted , 6 users are following.

jean20935
jean20935

Hi All

I am new to this website.I have been unwell for some considerable time but only fully diagnosed with SLE a couple of months ago.I alreay have two other autoimmune problems (multi connective tissue disease). In addition to my existing tablets I have been given hydrocholiquine tablets. I understand there a long list of different symptoms and not everybody has the exact same list. For the very first time in a number of years I am not struggling with mouth and nasal ulcers. The one thing I am struggling with is constant temperature flares. Very embarrassing at times as I have to dress in layers so that I can frantically remove them to try and cool off!!!! My colleagues at work think I am in the throes of menopause - but I am way passed that!!! The nights are at night time. Sleep is the most diffiult to achieve at the best of times but this is making it worse. If anybody can throw any light on this I would be most grateful.

0 likes, 31 replies

31 Replies

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  • jean20935
    jean20935

    Posted

    Hi Sue/Theresa

    Good news Sue that you have got your appointment through. Just to let you know that my Physio referred me to a scheme whereby I can get an assessment done and a plan to help me with exercise to get my joints and muscles back!!!! Can't wait - really pleased - just the thought of not feeling 90+ is brilliant!! Is this something that would be good for you???

    Hi Theresa

    I have pernicious anaemia also and inject myself every 8 weeks. The chest pains I get are also not constant and are pleurisy which is one of the related problems with Lupus. I have mixed connective tissue disease and symptoms overlap with one another and it is very difficlt to diagnose. Keep a list of your symptoms so you don't forget to mention them when you next see your gp/consultant. My Physio told me that pins and needles and painful legs are also B12 related, so you may want to mention it.

    I find perseverance is the key!!! Good luck.

  • teresa95
    teresa95

    Posted

    Hi jean &Sue

    Thank you for all your support. It is so nice to chat to others in a similar situation.I am suffering quite bad with aches and pains at he moment as the naproxen has been stopped for two weeks, it is getting worse as the days go by.Have you been on anti inflammatory tablets?I sympathise entirely, I too feel like 90, but felt great on the anti inflammatorys! Cannot exercise at all, and feel so unhealthy, so any exercise programme would be of benefit. Let me know how it goes Jean. I will ask my Consultant if There are any schemes for a personal exercise plan when I see him in April.

    Your right perseverance is the key and being positive and keeping your sense of humour.

  • jean20935
    jean20935

    Posted

    HI Both

    Do you have Firbromyalgia?? I have this and although I have little or no swelling on my joints they are very painful as are calves, shoulders, elbows, ankles, hips etc. This is connected to auto immune - so I am told. Maybe this is something that you could ask. My Rheumatologist was very good he gave me booklets and suggested I look on the internet for information about this. My Physio also told me about pain receptors. I have learned more in the last two months than I did in the last five years!!!

  • teresa95
    teresa95

    Posted

    It is a learning curve, but the symptoms are so similar for auto immune diseases, that at times I wonder.Having an M R I scan next week, this will finally put my mind at rest re MS which is neurological, and has constantly worried me, when I began having health problems at the beginning. The consultant hasn't mentioned fibromyalgia. I have found a lot of info on the Internet which has been helpful.

    I will Keep you informed.

  • sue87388_UK
    sue87388_UK jean20935

    Posted

    Hi everyone,

    Just to update you all, I had my appointment with the rheumatologist.  It was a complete waste of time, he read my notes then stated that I should not have been referred to him as I suffer with osteo arthritis and the rash on my face (which was not present when I visited the rheumatologist) was a false diagnosis by the spinal consultant.  At that point I was practically dismissed without any tests being done.  What a waste of everyone's time. 

    I wish everyone best wishes with their illness and hope you all get some relief in the future.

    • jean20935
      jean20935 sue87388_UK

      Posted

      Hi Sue

      Sorry for my delay in replying. I am extremely disappointed for you. This again is somebody who does not understand this condition and knows so little he will not acknowledge it!!! Do persevere by asking your GP to refer you to another Rheumatologist. When the rash on your face next appears take a picture! They cannot refute evidence. I get so cross that we get dismissed so easily. I recently went to see an Oral consultant as I get so many mouth ulcers - my rheumatologist referred me to him - I know this is part of my MCTD but I went anyway - cos I had no mouth ulcers at the time and he took the usual blood tests - which showed him nothing - he said there was nothing he could do and to come back when I had a picture!!!!! Think I was just another number of his case load!!!!

      Don't give up and struggle on alone.... it is quite depressing to feel ill all the time and it is unfair that you need to!!

      Take care and keep in touch! X X X

    • sue87388_UK
      sue87388_UK jean20935

      Posted

      Hi Jean,

      Thank you for your kind words.  I recently saw my GP who has done more blood tests as I now get pain in my hands (painful finger joints etc).  I am hoping that something is picked up as this really is not normal.  My blood pressure is also quite high now so they are monitoring that with me too. 

      I hope you have better luck in the future with the Oral consultant too.  Keep smile 

    • marion64534
      marion64534 sue87388_UK

      Posted

      I went private for my first appointment, as I couldn't face waiting weeks, I realise not everyone is able to do this but it was worth every penny or should I say pound, I had an hour with the consultant who then did all my bloods etc on the nhs, diagnosed right away, that was 4 years ago, how my life has changed,but iv learned to live with it, I keep fairly well,but rest plays a huge part of my life, I'm now on azathioprine, once they find a med that suits you, you can start to enjoy life again,hopefully it won't be much longer for you.
    • sue87388_UK
      sue87388_UK marion64534

      Posted

      Thank you Marion.  I hope they find out what is wrong soon, I am just so tired most of the time and have to go to bed.  If I do try and do something (eg housework, trip out) I suffer for days after.  I don't see my GP again until late August as she is going on holiday, I will keep everyone posted if anything further develops.
    • hoop
      hoop sue87388_UK

      Posted

      Hey Sue, I've been going through this for years now with the same symptoms and results you have had.  I'm so sorry you've had to go through this.  I had a diagnosis of fibromialgia about a year ago but after a few days in the ER for very high blood pressure the doctor is sending me to a rheumatoligist.  I don't expect to get an accurate diagnosis from him and may get the same response you got but what else am I gonna do?  My symptoms are erratic and I never know how I'm going to feel so it's hard to have a life.

      Good luck to you and the others suffering from this malady.  

    • sue87388_UK
      sue87388_UK hoop

      Posted

      Hi,  I am sorry to hear you are suffering with the same symptoms I have.  How was your fibromialgia diagnosed?  I am currently having my blood pressure monitored as it is quite high and may need to take medication for it which I am not really happy about.  I hope you get a better response from the rheumatologist than I did, keep me posted.

      I will post on the site when I have had my remedial nerve root block injections, still waiting for the appointment though!  Good luck and I hope you get some relief soon.

    • jean20935
      jean20935 hoop

      Posted

      Hi Hoop & sue

      I also received a diagnosis of fibromyalgia from both my GP and Rheumatologist. Both advised me to take pain relief!!! Not sure either of them grasped how painful fibromygia can be and how much it restricts your life. Problem again is that high doses of pain relief just give you another stomach problem!!! Don't think we will ever get proper answers.....somtimes I think they want us to manage our own problems because they don't have the answers!!!

  • hoop
    hoop jean20935

    Posted

    Hi Sue and Jean.

     For years I had the symptome of an auto immune disease but because the symptoms would come and go no one would give me a positive diagnosis.  Finally last year they changed the spots where they poke you to see if it hurts and decided I have all the symptoms.  I think the blood in my urine and my blood pressure of 205/98 caught their attention.

    Jeane, I think you're right; they don't like to admit that they don't know what's going on so to save face they tell us it's all in our heads. 

    • jean20935
      jean20935 hoop

      Posted

      Mmmmmmm.... I have mixed connective tissue disease and at the last count I have 3/4 immune disorders.....my GP thought of all the most ridiculous explanations for my symptoms. My concerns, as point out is that if they don't diagnose and fix problems they ususallly get worse or you get additional symptoms.....blood pressure of 205/98 is worrying!! My GP is quite nice to me now that he has the reports from the Rheumatologist!! Just something simple like I have problems sleeping (I don't do it very well!) so I asked for sleeping tablets.... you would have thought I had asked him to scale the Eiffel Tower......but now cos somebody has decided that I DO have something wrong with me...he lets me have them every now and then and I get to snooooooooooze for England...not a lot to ask for something that lots of people do naturally. I must be good at nagging!!!!!
  • susan33651
    susan33651 jean20935

    Posted

    Hi,

    I'm still waiting for an appointment with a Rheumatologist, but I just wanted to say that my GP has been brilliant. I've had about 8/9 years of various aches, pains and weird and wonderful symptoms which all seemed to come on with a vengeance one after the other after my recent abdominal surgery. I went to my GP with a list and straight away she suggested Fibromyalgia, but accepted that some of the symptoms I have don't fit so she did some blood tests and lo and behold: Positive ANA, raised ESR and CRP, reduced Lymphocytes etc. And a referral!  It was she who suggested I take Amitrptyline in a low dose to help with both the pain and difficulties I've had in sleeping. I only take 20mg (as well as some Paracetamol and Ibuprofen) but it does the trick. I get to sleep quicker, sleep deeper and although I do oftentimes feel tired I no longer feel like the dead walking!!

    Keep your spirits up as there are some understanding doctors out there!

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