Hi, I'm new to this site and it's taken me a week or so to summon the courage to actually write something. I started to feel unwell last October, it started with sharp pains in my joints, sometimes the pains just spread throughout my whole body, I wondered what was happening to me, I may be 47 but I'm a fit and healthy lady that goes to the gym 5 or 6 days a week. I also started to have constant muscle ache in my back, shoulders and neck and the most debilitating thing was the tiredness.
I have also suffered for years with migraines that usually last around 3 days. Around the same time I get a migraine I also get a burning sensation on my skin, I can wash my hands or have a shower and it feels like the water is burning/stinging me, almost the same sensation as when your hands are cold and you put them under hot water, it's unbearable. When I mention this to ANY health specialist they just look at me with a blank expression and say: "no, never heard of that before." That may be the case but it's happening to me and you're making me think I'm crazy!! I was also diagnosed with vertigo which a specialist linked to my migraines, it was very severe in December 2013 but thankfully doesn't happen on a regular basis anymore.
Anyway I digress, as a result of the pains in October I went to see my doctor, I've subsequently had 3 lots of blood tests and all have resulted in weakly positive ANA in a low titre and La antigen (?). I have seen a rheumatologist who, to my face said it was Lupus but then his follow up letter said that I had a mild form of connective tissue disease. My GP said it was too early to tell and it could be Lupus or Fibromyalgia. The rheumatologist gave me injection in December which helped with the joints but not the muscle pain in my back. The joint pain has since returned so my GP has started me on a course of steroid tablets, I started on 6 a day, reducing the tablets by 1 every 4 days, I'm now down to 1 tablet a day and I'm due to finish tomorrow, and the joint pain has started to return. Oh I nearly forget (that's another thing that keeps happening - brain fog and confusion) my rheumatologist has said that I don't have rheumatoid arthritis.
I'm seeing a Osteopath for the back pains, I had my first treatment yesterday, and he used cranial osteopathy, I knew I would feel worse before I feel better, I'm just keeping my fingers crossed that something eases the pain. I was given codeine for the pain but it doesn't really help and it makes me feel like a zombie. I take amitriptyline and that enables me to get a good nights sleep, that said I could sleep the day away given half a chance.
As I mentioned earlier, I was constantly at the gym but these days I can't even drag myself there, I've put on 8kg in less than 6 months, probably due to not going to the gym, taking the steroid tablets and the fact that I'm eating slightly more than usual, it could be the tablets but I'm craving carbs, either that or I'm just comfort eating?
All the uncertainty, pain, tiredness and the fact that my lifestyle has changed so much is taking it's toll, I've become a different person, I'm miserable, I cry a lot, I don't even want to go out of the door. I work full time but my boss has been so understanding and has allowed me to work from home, but even doing that has made me feel guilty because I'm not very productive anymore. My husband is very supportive but I feel like I'm letting him down and dragging him down, he doesn't go to the gym as often as he used to, he doesn't like to leave me, especially when I'm constantly crying.
I'm due to see the Rheumatologist again later this month for a review, I'm paying privately and feel he may be dragging it out a little. How long does it take for a diagnosis?? Are there any other tests that I could have, I just want to feel well again.
I'm not sure if I'm asking for advice of just writing everything down, and to be honest I've probably forgotten half of what I wanted to say. Anyway thank you in advance for reading and listening to my moan, I'm so sick of moaning, I just want the old me back.
Donna x
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Are you saying that the pain improved with pred? What dose to start with? And never mind the fancier test - what are your ESR and CRP levels like?
Many of the symptoms you are describing are ones I had with something called polymyalgia rheumatica - you will find a lot of info about it here. It is one of the autoimmune disorders that could be classed under connective tissue diseases. I had the burning sensation when washing my hands/having a shower as well as most of the other things. I'm not saying it is and I'm sure some doctors would claim you are too young - but it needs to be considered, especially if a lowish dose of pred helps.
Does anything in the links there ring bells? Many of these things overlap - and doctors look at you like you have 3 heads when you describe some things but when you ask other patients they say "Oh yes..."!
I'm not sure about the ESr and CRP levels, that's the problem, a lot of the information I'm receiving is very sketchy, I've apparently had the full range of bloods (3 times) and they said the only one that seemed to be an issue was the ANA.
The joint pain reduced significantly at the beginning of the pred course, I was on 30mg a day and it has been reduced to 5mg on the last few days, the course ends tomorrow, I was scheduled to see my GP yesterday but she cancelled due to a family emergency, I now have to hope that I can get an appointment with a different doctor tomorrow where I will have to explain it all over again. The muscle pain in my back, shoulders and neck is constant, but some days are better than others.
I will take a look at the link you sent and come back to you.
Thank you for taking the time to respond, I appreciate it.
It doesn't matter about the ESR/CRP tests really - in about 20% of patients with PMR it is never raised. The diagnosis should be based on the symptoms and ruling out other possible answers. But a good response to a moderate dose of pred and return of the symptoms when you stop is felt to help in the diagnosis as one of the pieces of the jigsaw.
Thanks for that. I've just looked at the link and also on the NHS site for PMR, and it's helpful, I'll be flagging it up to my GP, if I get that appointment tomorrow. Thanks for your help.
It is worth testing your Thyroid, but be aware that the test most GP's dos is the TSH which is pretty useless, Thyroid UK list the private tests needed to get a more accurate picture. Also get yourself tested for Hughes Syndrome/APS, frequently missed by the medical profession, often the trio of disease is Hughes Syndrome/APS, SJogrens and a Thyroid problem, and some also have Lupus. I have all these plus a few more.... MaryF
Hi Mary, I've had the thyroid test by the GP and it came back clear. It appears a that I have to go to my GPS which all the possible things that it could be, sadly I have little faith in them at the moment.
Ive never heard of Hughes Syndrome/APS or SJogrens?
Thank you for your advice, but how do you cope with pain and tiredness, I'm struggling and I'm just not used to it?
I do mine privately, also you need to either via these or your GP find out what your vitamin D, B12 and iron is doing, Hughes Syndrome/APS - Sticky Blood, Antiphopholipid Syndrome is a cousin of Lupus, best to rule it out.
My TSH test for Thyroid stayed normal for years despite me having very very obvious thyroid problems. I am so glad I tested privately as it showed I was severely hypo thyroid. Best of luck. MaryF
MaryF, my vit D, B12 and iron levels were all fine. My GP did we lots of blood test and I saw the rheumatologist privately and he did further blood tests, he didn't give me a copy of the results. I'm sure he can provide a print out. I've got a lot to learn and have a lot of reading to. I would sooner go armed with information to the GP and rheumatologist and perhaps insist that they do the tests.
Yes, a really idea to get the print outs as sometime in range, means you can be at the bottom of the range! It took me years to get diagnosis, but have them all now! Best of luck. MaryF
Yes, maybe but be aware the tests I list above for Thyroid, are ones you have to do yourself...as GP's are taught to only do the TSH test which is not reliable.....My B12, my iron, my D and my Thyroid were all out of range, and are now better...since I took charge of them all. Best of luck. MaryF
Thanks MaryF, I'll look into that. The doctor would only discuss my low moods and took me off the predicted for 2 weeks to see how I get on... painfully I should imagine! He called me into the surgery 50 mins after my appointment and then had the cheek to tell me I had 10 mins. Thank again for your help.
an untreated Thyroid will cause low moods! I hope you get to the bottom of it all. It is also very annoying to be told you are in range for D, B12 and iron and find you are right at the bottom of the parameters of normal, I was! MaryF
Even if the GP requests looking at Reverse T3 or T3 the labs often do not do it, however at least the price of the tests has gone down, I regularly do mine. MaryF
Welcome to the community. Thanks for taking the time to share your experiences with us. I'm sorry that you've had such a hard time recently.
We've got a free information pack that you might be interested in. You can request a physical copy or download a digital one from: lupusuk.org.uk/contact-us.
Additionally, we've got a number of publications that you might be interested in here: lupusuk.org.uk/publications.
You might be especially interested in our factsheet 'Lupus: The Symptoms and Diagnosis' which details how lupus is diagnosed and what sorts of tests the doctors will run.
Our booklet 'I Want to Work' might also be helpful as you said about your working scenario. It's great that you've got an understanding boss but the booklet might answer some of the questions that you're asking at this stage.
It can take a long time to get a diagnosis of lupus as the diagnosis is based on a number of criteria, rather than just on one specific test. Some people are diagnosed within a matter of months, others might have to wait a couple of years for a diagnosis.
Keep us up to date on how your rheumatology appointment goes this month.
Thank you George, I've looked at the downloads and there's some useful info on there but my GP has took me not to look online, ironic really, I've lost faith in my GP. I'll keep you updated on the visit to the rheumatologist.
There is a lot of bad information on the internet so it's understandable that your GP would say this. However, our publications are all certified by the Information Standard. This is a programme for organisations that produce evidence-based health and care information for the public. This assures you that you can trust the information on our website.
Thanks George and I totally agree with you, I could put myself into an early grave if I read some of the information available online. However, I do stick to the trusted sites, yours and the NHS site have been really helpful. It was funny though because my husband once went to the same surgery and he gave the GP (granted not he same GP) a list of symptoms, only to find the GP looking on Wikipedia... hilarious and yet scary!
You poor thing i have lupis,raynauds,sjogrens and fibromyalgia these collectively are known as connective tissue disease. It took me a year and strong letter to my rheumatologist to get any joy. If the pain is returning go back to your gp and get some more pred. It sounds like you need more medication from your rheumatologist so when you see him/her insist he gives you something. Gp's dont really know that much about lupus it has so many characteristics. Good luck. Xx
Hi Joseiswolf, thank you for your comments and taking the time to write. I went to my GP yesterday with a list (thanks to everyone else who responded to my post) I appointment was 50 mins late and ironically when I got in to see the GP (not my usual one) I told him about my list, he said sadly we have 10 mins, I quickly went through some of them, he focussed on my low mood, asked me if I was suicidal, I told him no, just extremely low and tired, he gave me a phone number to call for counselling. He also took me off the predicted, he said my course was over and I was to go back in 2 weeks for a review and to stop looking on Google for information. All in all a waste of an hour. Thank you to you and all the other kind people on this site, I don't feel so alone any more xx
Typical dr mine tried to tell me it was my low mood. Steroids can cause that and feeling suicidal too. I hope the rheumy you see helps you. It's disgraceful you have to see him privately. If he does give you something ask if you can have nhs prescription and not a private one,think private are more expensive and if agrees to keep seeing ask him to see you on the nhs. It will cost you a fortune going private. Hope this helps. Good luck. X
Hi Joseiswolf, Strangely my mood seems to have improved since being off the steroids, that said the pain in my joints, especially my ankles has got considerably worse. I walked for 10 mins yesterday without pain and then all of a sudden it started, I just stood in the middle of Manchester crying. It actually felt like my ankles had been broken. I also started to get pain up the front of my ankles and lower legs.
Anyway I digress, my medical insurance is helping with the costs of the Rheumatologist, up to the sum of 1,500 so at the moment I'm within that, I got to see him 1 month quicker than I would have done on the NHS waiting list, he does work in the NHS but in a different region so I wouldn't be able to see him on the NHS, that's not really a problem though as I've done a bit of research and there is a Lupus specialist in my region at Hull Royal, I'm going to see if I can see her on the NHS. I'm not sure if I'll be able to see her without a firm diagnosis and from what I can gather that could be a long time coming. I'm still trying to stay positive though so I'll speak to my GP next week. X
Thank you JeffBOT, there are some really interesting points raised in the links. I must admit though, although I felt like death for 2 days after the treatment I've had no pain in my neck shoulders or upper back since. I've got to the point where I would give anything a go.
If there is a specific joint (ankle, knee, hip) that causes you most pain, have you had an MRI scan to see what the state of the joint is in detail. If it is not pain localised to a joint, then it might not be worth doing.
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Quick update
Lupus or anxiety?
Migraines 
Possibly Lupus 
*forever moaning* exhaustion taking over 
