i

i have been feeling joint strain and walking in the mornings can be a bit difficult, i went to the drs, and had my bloods done, but they seem ok it confuses me when they say these things, i am on hydroxychlorequinne (if i spelt that right) and im suppose to stay on it, it keeps the major swelling down, but im stil getting tiredness, low energy although i go gym, i have read its like flu symptoms which i totally get, are the drs really seeing the bigger picture of this illness, as i can see alot of people are having alot of the same symptoms.

5 Replies

oldestnewest
  • If I could have a pound for every time I've gone to the GP and said I feel tired with no energy to do anything and I am in PAIN, only to be looked at like the worlds biggest malingerer and dismissed with 'well your bloods are fine', then I would be a rich woman! I've lost count of the times I've been in real pain and been told my blood markers are fine. So what, there's obviously a difference between blood marker readings and the real thing, which answers your question, no GPs don't see the bigger picture!

    Unfortunately these are the symptoms of Lupus, you don't say how long you have been diagnosed.

    I find a hot shower in the mornings helps me to loosen up and move a bit more freely.

    Take care, Angela

  • My Doctors only know what I have found out but now they have computers they can pull the info its self.

    I when first diagnosed went to Doc's nearly every day,but then I got in touch with Lupus U/K and they sent me leaflets and i read some books and now i only go to Doc's just to have my bloods done every 6 mths.Doctors were not trained in Lupus (But i now believe they are) I made the choice not to let Lupus get to me,I could only do this by what I read to understand Lupus and my body.

    I am involved with Lupus area group.and a member of Lupus U/K,which i urge people to do.

    This group is fantastic.

    All the beat XX

  • I too have difficulty walking in the mornings. Then again later in the day as I get tired. Then my legs are like lead. I am also on Hydroxychloroquine (400mg) & continual steroids but still get swelling mainly in ankles and knees which is painful.I still get extreme fatigue. I find lying in a hot bath does help improve movement. I don't go to the GP unless it is absolutely necessary. I also think the new GP's have been trained in lupus but not the older ones. I mention this as my new young GP seemed to know something but added it is unusual to have. I don't think they realise what it really is like to live with. Take Care x

  • hi thank you for the replies, it seems i am not alone, and feel comfortable knowing i am not loosing it, i was diagnosed about 2006 i think,been so long, it was much worse back then, the severe pain and the major major swelling and mobility decrease has subsided, but i can go for ages without a thing, then a couple of days i feel exhausted, i do try to avoid letting this dis ease get me down, but there are times where going to work is just not the one, and at the best of times i just continue and muddle on but i know when im on a real low, and i am off work, and mainly sleep, i do have a daughter, so its a must to function for her but i do need that time to recover, i DONT LIKE taking meds, so i try to avoid the pain killers over a long period., i do try to manage things and not even let it get me down, but this week i am shattered.

  • i am glad to know there are people with the same feelings as me xxx one love and blessings xxx

You may also like...