I will try not to waffle on, I just could really do with a listening ear at the minute!
I don’t have a formal diagnosis- I’ve been told that something is going on with my auto-immune system but blood tests haven’t shown enough to give me an official diagnosis of anything. I was in hospital for a month with Myelitis (inflammation of the spinal cord) and for the last 4 months have been pretty unwell.
For those of you who don’t have an official diagnosis, how do you get others to understand how you feel? My partner was great when I was in hospital but now that this has been ‘dragging on’, he seems less understanding. He gets frustrated when I can’t do things. I sometimes push myself to try to do more so that he can see I’m trying, but I end up more exhausted. My family don’t live nearby and don’t seem to understand how I’m feeling as they keep asking about when I’m coming to visit. My limbs are really heavy and tired and somedays just getting out of bed and getting dressed is a struggle. It’s so unpredictable as occasionally i’ll have a better day and be able to go out for lunch. I struggle to plan things as I don’t know how i’ll feel.
Sorry to moan, I just feel really alone. When I can’t say “I have x (diagnosis) and this is what it means”, it’s so difficult to explain to people how I feel. I don’t even understand it myself. My rheumy is going to start me on steroids soon, I can only hope that they will help me to get some of my life back.
Thanks for listening x
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SRiley
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It is without a doubt the toughest part of your journey. No one gets it because most of your suffering is invisible.
The ups and downs of good and bad days send yourself and others into a state of confusion.
Explaining how you feel most of the time is impossible, because it’s unexplainable.
A little positive though, your rheumatologist is going to start you on steroids. If your suffering from an immune response the steroids will tackle it.
I spent almost 5 years of no one listening. Eventually my gp put me on steroids and I saw the light at the end of the tunnel. My old self came back. Some rheumatologist will try the steroids as a means to help in diagnosis. Routine bloods for many do not reveal the answers. This can be frustrating due to how you feel.
For the time being try and concentrate on you and what you can manage. Without a diagnosis others are usually quite ignorant towards you. I’m currently diagnosed as UCTD, even with this title I get little help 🙄
Fingers crossed the steroids will work. When are you due to start them?
There is light and eventually that light will get brighter for you
Thanks so much your response means a lot to me....I really need some positivity today. I had tried to go out this morning for coffee with my partner and could hardly walk to the car. He seemed so fed up. I have ended up back in bed, feeling like a failure
The Rheumatologist ran some more blood tests and he said if they come back ok he will start me on the steroids. He didn’t want to not explore other avenues before I start them in case something else is going on. I’m hoping it will just be a few more weeks. My rheumatologist seemed lovely, so I’m hoping he will help me
It’s awful that you had to wait 5 years...you must’ve been so frustrated. It’s encouraging to know that the steroids were effective for you I hope they will be for me- the rheumatologist said it is 50/50 as to whether they will help.
Sounds like you have a really good rheumatologist.
Maybe you sense your partner is fed up because you are fed up?
Without proper medication right now your likely to experience more lows than highs. Try and talk to him, he may actually be really concerned. He has most likely seen you go from being full
Of health to really struggling, that must be tough on him.
These immune diseases come in all sorts of shapes and sizes which makes diagnosis difficult at times.
If you feel you can’t talk to him there’s loads of us here for you to help get you through it.
Ps don’t feel like a failure, none of it is your fault xx
Thank you for caring It is so nice to actually chat to people about this and not feel like I’m being over-dramatic!
I think my partner is worried that i’ll never be ‘normal’ again...he can expect too much of me at times and then if I can’t do something, can say very negative things about how I can’t do anything anymore. It makes me feel guilty and sad. I haven’t had treatment yet and have made some progress- when I was in hospital, I couldn’t walk at all and now I can walk short distances on good days. I want him to see this as a success but he is a bit over-whelmed about the unpredictability of it all from one day to the next. I know it is hard for him, I just feel like I am just a burden at times
My rheumatologist seems lovely so I know I am lucky in that sense. Hopefully I will get his letter soon and then can start the steroids.
Agree 100 percent, spent roughly 7 years w/o diagnosis and wasn't taken seriously until the very real and physical signs of autoimmune iritis that hung on to me like a long lost cousin. Even so, initial tests came out meh, but I eventually found out I had not only the genetic disposition for sarcoid but significant inflammation. Prednisone helped and the MTX is just starting to help after roughly 8 weeks. Still, I feel better than I did before getting the help I needed, so the upside is if you keep pursuing no matter what, someone somewhere eventually listens.
You are certainly not « moaning » or « waffling on. » As Lisa Lou says, this is one of the hardest times. I don’t know if this will work for you, but I think just telling people you have an autoimmune disease (they have told you that, your rheumatologist is treating you) and that your main symptom right now is myelitis is enough. You don’t owe others a specific diagnosis. Sometimes we think that if we had a more specific diagnosis it would be easier. It might, but people don’t understand scleroderma, myositis or lupus much better.
It must be scary to have been hospitalized and to not know what is going on. Once they know the cause is autoimmune and not an infection or something else, that is a big step. You are getting treatment — most important thing.
Thanks so much for being kind I feel like I need to justify how I feel to other people, when really, I don’t. I think my family have got used to me being the one who visits them, so they rarely come to see me. I don’t like being selfish but I don’t have much choice at the moment!
You are right- I am lucky to have a good rheumatologist and even though I haven’t started treatment yet, I am hopeful that it will help me It not; he said we can try something else. I need to try to be positive I know.
I'm really sorry that you are in this position. I know it is hard not having a diagnosis, but you might need to explain to your partner that you are still in pain, fatigued, struggling etc as he isn't in your body and it mightn't be obvious from looking at you exactly how much you are suffering!
Just be aware that a diagnosis does not resolve the lack of understanding. My favourite response from my family was that, "there's lots of people in Queensland (Northern Australia - very sunny) with lupus who work out in the fields all day on farms. They just cover up (with appropriate clothing) and they are fine."
My husband finds this most hilarious and says it to me now as a joke at least once a week. We feel it is important to laugh if one has an unsympathetic family, such as mine!!
Apart from getting your partner on board, I really hope you get relief from treatment. My life has improved so much since plaquenil.
It is weird how people respond isn’t it?! I think people don’t know what to say so can be very insensitive without meaning to. At least your partner and you can joke about your family together! He obviously understands how ridiculous their statements are!
I have spoken with my partner but he doesn’t really like to dwell on how I’m feeling. He has been very supportive in terms of coming to appointments with me and doing more jobs around the house...but he struggles with the actual emotions behind how I’m feeling. He said recently that I was being over-dramatic so I just haven’t said much about how I’m feeling recently.
I’ve had very similar from my husband - wonderful as he is. I guess it’s more likely that they can manage to be in denial than we can because they aren’t living with it 24/7. X
Maybe he’s frightened and doesn’t know how to express himself. When my husband, who never gets sick, ended out in hospital a couple years ago with a mysterious illness I was so frightened I became quiet and withdrawn. I truly believed him but didn’t like to talk about it , which was not right in retrospect, but it was only because I was too scared to think about what it could be.
Aw hun, this really is such a hard situation to be in. You have obviously been arguably very poorly indeed, that is a long time to be in hospital!
My autoimmune issues are hinted at by abnormal bloods but nothing is so bad that it reveals the extent of how bad I actually feel. The rheumatologist has now agreed that since I’m either suffering from lupus or fibromyalgia, we can try treatment for lupus to see if it makes a difference.
My husband feels similar to your partner I think. He tries hard to be understanding but I was always a go-getter, did lots of things and was very ambitious. We have a big family and I did most things for the children and they were very reliant on me. Now I just try to be as honest as possible and if I can’t do something, I just have to say, but I frame it as - if I do that then I won’t have enough energy to go out to work the next week, and that kind of puts it in perspective for him as we rely on both salaries to support everyone.
I really hope the steroids help. My understanding is the steroids kick in very quickly and you will feel noticeably better in no time at all. Maybe, until then, you could find alternatives for the times you would go out with your partner - but fancy coffee and cakes and it’s like being in a cafe in your own home etc. We are doing this more and more and nobody seems to be missing out on anything!
Thank you for your suggestions 😊 we are trying to do more things in the house, like making nice food and watching films. It just feels very different to our ‘normal’ life. Like you, I’ve always had lots of ‘get up and go’- I was running my own business before all this happened and now I’m bringing in zero money...just another thing to worry about!
It’s been so nice to read everyone’s lovely responses, I feel less alone just by knowing that other people have been through the same thing...although I wouldn’t wish this on anyone!
I try to think of it as adjusting to a new type of normal. And maybe a good thing as we were probably always over stretching ourselves and I don’t think there is anything wrong with stepping back and trying to establish a better work/life balance. You may still be able to run a business from home when you start to feel a bit better 😘😘😘😘 xxx
I find just saying " no thank you, not today" with zero reasons or excuses works best in achieving other's acceptance of my not choosing to do something. I found if I mentioned my stroke being the reason others around me became uncomfortable. Our mentioning our illnesses reminds others of their own vulnerabilities and mortality and reminds them of the possibility of losing us too and by nature we all try to deny those possibilities and this might be why our loved ones try to talk us out of being " too ill" to live our lives.
I admit my own wellness and mental health have improved when I also stopped talking and thinking about my illnesses' impact on my life as well. This change was hard for me for even before illness I always had a hard time just saying no with out going into a huge excuse as to why and no one really likes to hear our excuses with or with out an illness. They just want a yes or no generally.
Also, I use a therapist or support groups to delve into the emotional side of illness rather than my spouse or friends. I realized during my husband's rectal cancer three years ago that only others living the care taker role or trained professionals were able to relate. Maybe you both could explore support groups, a care taker group for him (honestly he is in the harder spot as one on both sides of illness I much prefer the patient role to the care taker side) and a patient group for you.
Hope you feel better soon and take care but just be honest and say no I will not be doing that today when you do not feel like doing something. Do not say can't just say no. It might help avoid the illness fear and resentment you are presently sensing from those around you. I hope you are able to find a successful treatment for your illness.
Such good points, Roarah. I, too, used to try to get support from others and never felt they could completely understand. They probably just can’t. Now that I rely on people here, I don’t really want to talk about my health issues with friends and family.
We all have to practice the « no, not today » response.
I really like your approach Roarah of just saying no and not explaining and I'm going to try to apply it in my own life. Thank you for sharing your wisdom with us here. Lulu.
Yes, you are completely right...it’s a matter of getting used to saying ‘no’. And I see where you are coming from- it must be very hard to be in the ‘carer’ role. I feel very sad for my partner. He didn’t sign up for this and it seems so unfair to him Thank you for your response
Hang in there, this is the roughest patch. My own hubby was giving me the side eye when I first started having serious issues and didn't believe me until autoimmune iritis popped up. It can be aggravating and lonely but do not give up. Places like this forum help tremendously and the support is amazing. You are certainly not alone love *hugs*
Thank you Everyone seems lovely. I am so grateful for everyone’s responses. It seems that diagnosis has been a challenge for most people on here. Such a shame that we have to use our energy to fight our corner!
Indeed. I believe it is because autoimmune disorders rarely have something tangible to see. Sadly, I thank the heavens for my iritis as it was a manifestation of the issues that people could finally pinpoint. We can "see" a broken bone" or a tumor but the feelings and issues that are onset AI are so hard for people to compute and can be handwaved away, which is so unfair to sufferers who need all the support they can get. Here's a tip that kinda helped me. Don't tell people you feel tired, tell them you have "muscle weakness" and repeat this often. When I started saying that, people looked at it differently. It's like how the Epstein Barr virus causes chronic fatigue. Call it chronic fatigue and you get an eye-roll. Say, I have the Epstein Barr virus and ppl ask about it and seem to give more understanding. Humans are weird creatures. LOL.
Indeed, if only to help them understand a bit more of what you are going through, make it more tangible in their minds. Hope you get the moral support and help you need.
Can totally relate to your symptoms. My lethargy and pain dragged on for 4 months. I was diagnosed with lupus and on hydroxychloroquine. Some days better than others but mostly felt like a limp rag.
Recently rediagnosed with polynyalgia rheumatica and put on steroids - stopped the Hydroxychloroquine . Energy returned ( feel like I’m on speed now) and pain 90% improved. So apart from a racing heart - high blood pressure - I am functioning better. Not able to sleep very well. Trade off ?? Seeing new rheumatologist later this week. Will try and discuss further.
Steroids will certainly improve your energy levels. It is extremely difficult to explain your symptoms to friends and family. Do hope you get the support you need. Sending you my best wishes and tons of positive thoughts. You will feel better soon.
It’s really encouraging to hear your story I so hope that the steroids will work for me too. I’m only being put on a low dose for a short course initially but my rheumy said if I struggle when I come off them, we can review things. I have my fingers crossed!
Indeed, I am not addictive personality and I hate being tied to a pill but every time they try to phase me off prednisone I fret because it really does work wonders.
I had been , the local hospital had been messing me about with appointments.
On admission I was put ton 60 MGM’s steroid daily plus 2 lots of iv antibiotic.when discharged I was given 2 antibiotics in tablet form to keep me from worsening.
I then had a diagnosis of CTD. NSIP.Afer months of blood tests and bronchoscopy,auto immune disease was mentioned???
Have now got a firm diagnosis of lupus,my hairline is receding.
No one really nderstands,they say it’s good because it isn’t cancer. At least with cancer,there’s a chance of being no in remission.lupus goes on.nobody really knows what it is like,because when I go out,driven in a car,I put on a brave face.
On a practical note CBT really helped me. The GP GAVE ME A LEAFLET and I self referred.i chose to do it online,it was better for me as I had so many appointments.
It didn’t help my physical state,but it enabled me to sort my head out.the everything is still stored online so I can refer to it.
The s it possible that your GP might contact the rheumatologist and ask if you can go on steroids sooner than Later
PSwhen I first looked at the title of your post,I thought I had written it.
I do have one very definitive diagnosis of Sjögren’s but often feel that either other stuff is going on or else that my doctors and others have no real concept of whether my disease is active or not. In other words it’s either very active and they are wrong or else I have additional active disease overlapping which they are unaware of because my specific antibodies are almost normal.
I don’t know about you but I think, once we have been very ill, hospitalised, confounded doctors and frightened our families - we can feel this great sense of anti climax when we are back home, our illness forgotten by all but immediate family and friends - who are so relieved to have us back that they expect us to be equally relieved and all better and back in track.
I also get really depressed when people who ought to know better because they were once undiagnosed, belittled and equally isolated themselves - turn round and say “well I have something life threatening and serious whereas you just have some mild autoimmune problems - be thankful!”.
This feels terrible to me because without a named disease to research and blame we a left going round and round like a ship without a mast.
If we feel bad and can’t shake off a simmering autoimmunity then it’s not mild or just x,y or z. So personally I will always relate to the undiagnosed and very unwell - despite now being, at least partly diagnosed. Uncertainty for me is always the pits.
For what it’s worth I share the symptoms you describe ie leaden arms and legs and terrible fatigue. You need hugs and a disease name to blame. I can’t offer the name of your particular AI beastie of course - but I can at least offer you the hugs by cyberspace in droves 🤗
Yes, I totally agree! When I was in hospital, I had visitors everyday- Now, I’m lucky to see someone once a fortnight! I know people are busy and I appreciate their support but I feel like I probably need the support now more than ever! I hope I can offer other people support when I’m in a better position...I now realise how invaluable it is just to see a friendly face every now and again!
The fatigue and the heaviness is the worst bit for me. I don’t understand why my legs feel like lead! Very frustrating. I sympathise with you on those symptoms.
Something to consider too is that you just lived through a very scary incidence. Some of your fatigue and heaviness can be symptoms of PTSD. I thought similar symptoms after my massive stroke were caused by the stroke and positive Antiphospholipid antibodies but my neuro suggested they might be caused more by my mental responses to the trauma not the infarcts and antibodies. I was skeptical but decided to try a neuropsychologist to see if t helped. Boy did it ever. My illness caused anxiety and depression were indeed to blame for my fatigue and weird tingles and weakness. CBT is giving me my life back. Might be worth exploring you just lived through a very scary medical emergency it is bound to cause many somatic symptoms in addition to your inflammation.
I will definitely look into CBT... I have been very anxious as everything started when I collapsed in the street which has made me nervous to go out. I have never had anxiety before but I think this whole experience has really shaken me.
How scary! I had my stroke on holiday at a water park I was a Jane doe for I could not speak at all and my family was in line for a ride I totally understand your not wanting to be alone or out. I was already a bit of an anxious person after my husbands cancer diagnosis but never like this until after the stroke. I always thought PTSD was more about witnessing or living through violence, like soldiers and violent crime survivors, but it is also very common after serious illnesses too. There are options other than CBT, like ssri's if therapy is not for you. Xo
Hi I haven’t been dx officially with Lupus either cause the test can’t seem to figure out what kind I have. My sister says it’s the one that has to doing the blood work at the right time. I have a lot of physical issues. From arthritis all over my body to peripheral neuropathy all over my body to. Nerve damage in my neck. I’ve had over 40 surgeries in my life. Plus just had back surgery again. 4 shoulder surgeries and it still kills me.
So I understand where you’re coming from. I’ve got family to talk to. But sometimes they get tired of hearing me complain about the pain.
I’m on strong pain medication but it doesn’t control it totally. I’ve started smoking kush to help as well as cbd lotion to rub in on spots that aches off and on.
Pretty good bunch here when it comes to listening and giving advice.
I have but we all have here. I know with certain types of lupus you can have a pretty normal life and some not so. My sister has lupus and she has had a good life. Some other issues with old age. We’re both over 65. My aunt she has the kind where she can’t go outside with out covering up real good. Sun doesn’t like me to much either. Do research on types of lupus and see which one fits you kinda. As well as looking for things you might be able to do to help you. I’ll pray that you get better. But don’t take verbal abuse either. I was in a physical and verbal abuse years ago for 10 years. I left him. We’re worth so much more. I found my soul mate a few months later and we’ve been married for 34 years.
I feel for you SRiley. I had symptoms for years and was told again and again that I was okay. So I just thought I was a low energy person. It wasn’t until 2014 when my symptoms became severe, that I finally tested positive for ANA and had a positive anti-RNP antibodies. All the years before I missed out on many family gatherings because I was too tired. Especially when I was working. You are in the right place because many of us have been where you are. Don’t feel bad about talking to us about it. You are courageous to tell us how you are feeling. I know for me I try not to let on how bad I feel sometimes, then I will see myself in a photograph and think wow I looked dog tired there. You keep on spilling to us. I hope you get a diagnosis soon. Not that I want you to be sick, but we know instinctively that there is something wrong, but until we meet that criteria 🥵xoxo Nan
Yes, I feel like having a ‘label’ would just help me to understand what I’m up against. My biggest worry is that no one will get to the bottom of what is wrong and I will keep feeling this way but my rheumy seems helpful so I will have to try to stay positive!
They will eventually, just be diligent about reporting all your symptoms and as I suggested to sassyZee, take pictures of any rashes that you have. And also a diary of all of your symptoms is helpful. ❤️Nan
Hi SRiley, I know you have gotten many reply's to your post, and you should. We are all here to help support you in many different ways. What you are going through is not a walk in the park, (although that would be nice),it is a very hard road to steer and many of us do not have a passenger to our side. I posted a link a bit ago, and maybe it can give you and those who care for you a better understanding. I had given this post to my husband , for he to is ill. He found the words on that web site so profound that he took it to his Dr. to read, and the Dr. was so very moved by it she finally understood him. Now this was a Dr. and a very good one, yet she had never had a patient show her such an explanation. I hope you will take the time to read it, and have those close to you share in the words it speaks. Please let me know if you can read it. Sending you power, peace, and strength. thestorm nationalpainreport.com/my-s...
Hi harmony2, here is the link again, sorry I had trouble with it. thanks to my husband, he got it. hope it helps, let me know. peace and blessings, thestorm nationalpainreport.com/my-s...
Hi SRiley. Having read your story, many of us can understand how you are feeling. One good side of your story is that your Rhuematologist is prescribing steroids for you and hopefully this will help. As for the blood tests coming I negative, this does happen and it is most frustrating. Ask you Rheumatologist if your symptoms could point to LUPUS and ask for further blood tests and if you could see a LUPUS specialist. As for your partner and family behaving as you described, this can be frustrating for you and again I feel for you as my ex partner was the same. They cannot see how you feel as, to them you, look the same and not ill. Yet you can be feeling so very fatigued, full of muscle and joint pain that you want to hide away and be understood. At this moment in time you need to think of yourself and rest if your body tells you to and this is important. Are you on any pain relievers, if not ask for some paracetamol as they do help me with some of my symptoms and can relax you and help with some of the pain. But of course your symptoms must be diagnosed before you can be treated properly. Don’t forget to ask you Rheumatologist re speaking with a LUPUS specialist. I am thinking of you and send you gentle hugs. Let me know how you react to the steriods
I take ibuprofen regularly. It helps with headaches and some of the pain in my legs. My partner thinks I’m relying too much on painkillers as they might effect my stomach...but they are one of the few things that are helping a little bit.
My rheumatologist is good but his specialism seems to be arthritis. I will be interested to see what he puts in his letter!
Hello again and thank you for your reply. I was on Ibuprofen many years ago and had to stop taking them as they did interfere with the lining of my stomach. I have to say that I was on a high dose of aspirin before being prescribed Ibuprofen, so they didn’t help with the stomach. I was prescribed Hydroxychloroquine and Plaquenil and I was managing for a while but later I was prescribed Methotrexate too. I inject the latter as I found the tablet form of Methotrexate didn’t agree with my stomach. Look forward to hearing from you on a regular basis in this website. Talking about your issues and having feedback from others in a similar position often helps. Sending gentle hugs and hope you start having some relief soon. x
Thanks so much Everyone has been so kind! I can’t see my GP at all, just the Healthcare practitioner nurse who is not very helpful. So I’m just relying on my Rheumy at the mo and I’m hoping he will write a decent letter to my GP surgery...!!
I am sooo Sorry to all, that the link I am trying to send for you and others is not co operating for me. Today, I will have my husband help me try to re=-post this very important link. Yesterday was our memorial day, so I did not go on line, and again my sincere apologies to everyone.!!!!!!! Please bare with me, and I will be doing it again before the end of this day. Sending peace and cyber Love, thestorm.😒❤❤❤❤❤❤
I have had a better few days but this ‘thing’ is very unpredictable which can make it difficult to plan things. My partner has been a bit more understanding as he’s beginning to see the cycle of how this illness flares up and then settles down. We try to go on a short walk most evenings so that I’m getting out of the house and building up my strength. I’m just waiting for a steroid injection once I’ve had a few more tests and I am really hoping that will help! I want to get back to work but I’m not strong enough yet....fingers crossed the injection will help so that I can get back into some sort of routine.
Hope you are well spottycheek?!
Im good. I have the up and down days too which can be frustrating for sure. I have had hip injections 3 times now and they have made a difference each time. Im actually scheduled for hydrotherapy to start to help with building up my strength and muscles so hopefully that will help improve it too. My worst part Id say is fatigue and that is the hardest thing to explain to others. I am really glad to hear from you and hear how you are going. Its great your partner is being more supportive as that can make a huge difference. Its a learning curve for all involved. Xxx
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How do the medicos manage to make me feel so inadequate and a hypochondriac
The lupus tiredness and how others cope with not feeling so guilty!!!
Feeling so fed up 😢
Feeling so cold !!!!
