Sorry to burden you all, I'm angry, hurt and so so confused.....
Had a Pain Clinic appointment to day......I have osteo and inflammatory arthritis, CTD and Lupus. Now I've been told I have Chronic Pain Syndrome...
..It was explained that the pain circuit has gone into overload and gotten stuck.....I did what I think a lot of people do, Googled it for more info and understanding....words like somatisation, ( all in the head for attention !!!!) psychosomatic,psychosocial...having diagnosis of osteo....Lupus etc.... one would expect pain wouldn't they? so how do they come up with CPS!!! I think its bloods again....Had several positive now not showing.....Am I imagining my joint pain...the grating and grinding of the bones...the clicks and crunches that send me into spasm...the cramp that turns toes and ankles into excruciating contortions, the feeling of walking through mud, the feeling that I've been ten rounds with Tyson...that my joints are being torn, the fatigue that takes away any normality, the feeling that my skin is crawling, the fever and sweats, the photosensitivity?
Believe me, I didn't want to stop work as I am now in a deep financial quagmire ....
I've suddenly lost faith....what's the point they think I'm making it up.......
xxxxx
Written by
lizzidrippin
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You poor thing. I really feel for you with all this. Other than keep fighting, you cannot do more than you have. I have only had 4 positives in 8 years and each new medic has to be convinced of your diagnosis. When I was first ill with many problems, a doctor questioned whether I had munchausens !!!. I had to see a psychiatrist to prove I was genuinely suffering. Luckily I only saw him once and the report he made is still in my safe keeping as the hospital will probably lose their copy as they have the positive bloods. I have recently been through another battle with a DR. Long story but I had the last word when st Thomas' wrote telling me the consultant that diagnosed me, was now working at my local hospital. I said," best you talk to her as she said I have lupus. I can't say I had the last laugh as the lupus has caused me quite a lot of internal problems while the Dr ignored my symptoms. If you, like me want to cry and scream, do that but get over it and continue your fight. I am lucky that I haven't the financial worry, but that is another reason to keep pushing. Best of luck to you.
Thank you 6161, you're right...it'll take me a couple of days to 'rejuvenate' then I'll come up with something. I might even go to my G.P. and ask for a psych evaluation... Already had kidney trouble......maybe that was in my head too!!!! Thanks again XX
Dear lizzidrippin,please try to ignore the points regarding somatisation. Chronic pain syndrome is a recognised condition. It is difficult to manage effectively because people often have a complex set of symptoms and underlying diseases. Sometimes CBT is offered to assist the person in managing the syndrome, just as CBT helps in a variety of chronic diseases. It does not mean the person is making it up or mentally ill. Ask your GP if that support may be available. xxx
But many of us have fibromyalgia which is a form of chronic pain syndrome alongside of lupus. I also have inflammatory arthritis and joint hypermobility and Costocondritis. I am on Methotrexate etc. The thing is, what will they do to help you with your pain? I thought they were there to help manage pain not make diagnosis! My consultant has offered that option to me. I think I shall decline!
Crps is a very real condition . I was 18 when I had a knee op ( removed the pattella and I suffered then what they called reflex sypmathetic dystrophy .. 20 years on it's called CRPS ... It's not in your mind how these complex chronic conditions have to treated holistically to get an over all picture ! I have been bed bound for 18 months and my GP is fantastic , compassionate and wants to help with physical and emotional side of things . But CRPS is real !!!!
I am so sorry you had to go through this lizzidrippin. And while I agree with the above that CPS is a real condition I don't think that that is the major issue here. You have been doubted and dismissed as someone who might be wanting to draw attention or someone who is exaggerating or making symptoms up mainly because of the negative blood tests. This is something all of us have been through a lot of times. We think once we get our diagnosis our problems will be solved, but alas that is just the beginning. I can't understanding for the life of me why someone who doesn't believe or get rheumatic diseases would want to specialise in this field. It is certainly not straightforward with bloods not always correlating with disease activity but a doctor is supposed to think outside the box and pay attention to the patient. If he/she can't, they shouldn't have chosen rheumatology. They should have gone into a clear-cut discipline where everything can be measured and gives you precise and reliable results. I had a run-in with my doctor at Tommie's very recently and he behaved very unprofessionally. Dismissing every symptom as being due to cold and saying I have chronic pain/fatigue syndrome. Just because of negative bloods and because his ego was challenged by the fact that I saw Prof. Hughes who totally disagreed with everything he said. My advice is...DO NOT let them put you down and make you doubt yourself and what you are going through. It is NOT in your head and the fact that all of us have been and are going through the same attitudes from certain doctors confirms that. I think that if you are not happy with your doctor/service and feel that you are being dismissed as someone who "makes things up" and are patronised, you should change to different ones. Don't let them intimidate you because you have a right and deserve to feel like a human being - not being in pain and feeling rubbish every single day. I just wish these doctors could experience one day of ours to seeing how it feels. And in addition to that you have got to put up with attitudes and sarcasm. It is not you hon, it is them. Unfortunately, you have to fight for most things when you are in this position. I hope everything gets sorted out soon and you feel better. My thoughts are with you.xx
Dont give up ... My doctor said I was Depressed! It all started when I lost my hair He looked at me as though I was a hypochondriac too. Dont let it dismay you, it does hurt when they look at you as though you're making it all up. It was not until I kept on and on about my fatigue and constantly Anaemic that the Doctor finally listened! By then I had many Lesions ... Finally referred to a Dermatologist .... (after seeing one for my hair loss, who also shunned me) Had a biopsy and blood tests and came back I had Discoid Lupus ... Then it was only through the lovely Derma that I was referred to the Rheumatologist ... Now my MRI (Physiotherapist ordered not my Dr) I have Arthritis and Bakers cysts!! Now I wait for an MRI on my spine and head (next week) Rheuma also found Raynaud's and Sjogrens .... what a way to come from "Depressed" lol ...... dont give up ... speak to your Rheumatologist about it and ask them to explain because you have these questions .... they must know your in pain through your diagnosis ... Good luck and hopefully you will get answers -x-
Maybe it's time to walk away, and look to more natural approaches. If they don't get it, why are you going to them? I've been where you are. The sooner you try something new, anything, other than begging people to help you, who don't really care to..the sooner you will get well. Think about this. How long have you been "fighting" and how is the working for you? Are you well yet? The only thing traditional medicine (allopathy) has to offer is drugs, and there are no safe, effective drugs fir SLE, or anything else. BTW somatic pain is not considered fake, or feigned. It means that you mind and body are both so caught up in pain, that you are now your own worst enemy. I doubt anyone doubts that, but don't mistake it for being called a liar. I am an RN, and know very well, as both a nurse, and someone with SLE that pain feeds on itself through your mind. If you can't perceive pain, you can't feel it. So, there is something to retraining your brain to not be stuck on pain and negative perceptions. Pick up a copy of Eckart Tolle's book Power of Now, or the second in the series called Your Life's Purpose. He has a great section in the book on the Pain/Body/Mind connection, and how to use it to your benefit.
I would like to advise you not to 'walk away' from your current treatment without the approval of your consultant. Treatment for lupus can be working without you appreciating it and stopping treatment can be very dangerous.
I'm a health care professional. THanks though, for your advice. If you re not getting well, then a treatment is not working. Unless you are treating the lab work, and not the client. No adult needs the approval of a "consultant" to make decisions for themselves. That kind of helpless attitude creates a sense of powerlessness which leads to autoimmune disease in the first place. If you want to help people, teach them the truth about illness, wellness, and that they have the power to change their situation. And yes, walking away from something that is not working? That's called sanity.
My advice was also for other people within this community. I have seen and heard too many times about people with lupus that have stopped treatment and suffered as a result of it. Whilst no adult 'needs' the approval of their consultant, I would strongly recommend that they seek it. They are generally in the best position, with their knowledge and experience to support you. If you ignore their advice you may be doing so at great risk.
Oh good grief. I am obviously not in the right place here. Good luck to you and your community. The greatest risk you will ever take is living small, and in fear of your own power. Take care.
I think Paul was only trying to help here, not impose his views on anyone. This forum is for everyone to express their views - it is then up to each of us to decide whether to take it or leave it. As for whether one can take risks with their health, again, it is a matter of personal preference - by all means encourage others to take a more bold view but leave room for different opinions as well.
I also work in healthcare. One day when I have the energy I will write a book - 'the other side of the fence'. I also transferred my care recently because I was nearly losing the will to live with trying to 'prove' my symptoms. That was the hardest thing I ever had to do - because many thought I was imagining things, spent too long in my field etc.
Long story short, second opinion, diagnosed within 45 minutes and now on treatment. Feeling better already - thank you, traditional medicine. BUT. I have also derived great relief during my time in limbo through yoga, massage, etc etc. I wont be giving that up, as it has kept me sane all this time.
Guess what I am trying to say is
- there is a place for both traditional and complementary help. Its using wisdom about what works for you - and is also a different scenario for everyone.
- if you arent happy or are (understandably) frustrated, get a second opinion. For me, this entailed a new GP looking at my 9 year history with a fresh pair of eyes and together we 'completed the jigsaw' which led to a second opinion. I think many of us have felt like banging our heads against a brick wall. It took my last tiny bit of resolve to walk away from my original team - but am so glad I did. LUPUS UK gave me the name of someone and I havent looked back.
I am in no way saying this is the end of the story. In the last few years I have gone through anger, disbelief, frustration - and paranoia that I was making it.
You deserve help - the right help - it may just need a slightly different tact. Stay strong, and many hugs. Many of us just need someone to believe us - and I hope you find that soon x
I will advice the lupus community to heed Paul's advice and not to walk away from their treatment. With such an illness there is vulnerability and one can be easily influenced. Just hang in there. Meditation and Sahaja Yoga plus my prescribed treatment are my options. Try other options plus your prescribed treatment.
If a specific consultant is not working for you or keeps ignoring your symptoms. Please change the consultant: You have only one life but there are many consultants, including many good and dedicated consultants.
Good luck with your quest for proper treatment. It's similar to mine. After a long struggle and a second opinion, I have effective treatment at last. Never give up hope!
Thanks Brightside. Pleased you've got some effective treatment, nice to hear positives.
Started with the meds as several people have said it's a process they go through.....calmed down a lot too...I will take control, it's my pain, not their's to guess...Thanks again xxx
Hi, don't give up hope..I've only just started to make headway after battling with the medical profession for over 30years having always being told either that nothing is wrong as blood tests were normal and I looked well..nice rosy cheeks etc..or that it just a virus that had to run it's course..We know our own body and we know when something not right and most of us know when we are being fobbed off..I find doctor's attitudes vary from visit to visit and depending how I feel sometimes I can handle the dismissive comments and other times I cant. I've even tried going to see gp when feelin well to try explain but it made no difference when have gone back feeling poorly as blood tests always normal. My breakthrough came after my optician ref me direct to the eye cl with something fairly minor but the eye cons ref me to a neurologist based on other symptoms...neuro then ref to rheumatologist where a possible diagnosis was made..it then took a change of rheumy, hosp and gp this year to start getting effective care and treatment..new rheumy started from scratch with history blood tests etc he says blood tests are often normal and need to work more with symptom pattern and response to meds...gp still bit dismissive at times but I can now jst contact rheumy if really concerned between appts and get answers back within days...it so worth going for second opinion...Good luck..stand your ground and don't be fobbed off with anything that you dont feel happy with...we are entitled to good safe care and treatment so ask for referrals and second opinions where you feel the need...finding a consultant that you can talk to and have faith in is so important..big hugs xx
Have a look in youtube into the video "Under our skin" (search for the whole film, not the trailer). I only ask you one little favour, after seeing the video, when you reach to conclusions, pass the message on. There are many out there suffering. Thanks. Best of luck and health.
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He looked at me as though I was a hypochondriac too. Dont let it dismay you, it does hurt when they look at you as though you're making it all up. It was not until I kept on and on about my fatigue and constantly Anaemic that the Doctor finally listened! By then I had many Lesions ... Finally referred to a Dermatologist .... (after seeing one for my hair loss, who also shunned me) Had a biopsy and blood tests and came back I had Discoid Lupus ... Then it was only through the lovely Derma that I was referred to the Rheumatologist ... Now my MRI (Physiotherapist ordered not my Dr) I have Arthritis and Bakers cysts!! Now I wait for an MRI on my spine and head (next week) Rheuma also found Raynaud's and Sjogrens .... what a way to come from "Depressed" lol ...... dont give up ... speak to your Rheumatologist about it and ask them to explain because you have these questions .... they must know your in pain through your diagnosis ... Good luck and hopefully you will get answers -x-
SLE and Fibromyalgia
Update and how do you cope being sociable? 
Hydroxchloroquine and flare ups
