LUPUS UK
21,673 members17,176 posts

Help and understanding

Hi all,

Hope I'm not gatecrashing as I've not had an official diagnosis. But I'm so so desperate to understand what's wrong with me- all my consultant has said is that I defo have an autoimmune disorder but waiting for rheumatologist appointment.

I think I'm scared I've been left poorly for so long that I'm scared they won't listen to me!

My symptoms are -

Extreme fatigue- I feel 90 not 36 🙁

Terribly aching cracking sore bones and muscles around the joints- mainly hips/lower back but now ankles, wrists,One elbow (go the other one holding out!lol) and neck.

On and off terrible flu like symptoms usually with horrific headache,temp and red swelling over my face-cheeks and nose. But then just goes next day.

Huge changes in my tummy.

In the summer I started getting strange rashes on my arms but mainly chest after being In the sun and I got burnt for the first time ever even with high factor on. ( I have lived abroad so know my body and the sun eyc so this is so strangefor me )

Last wk my ankle just gave way after feeling weak and now I'm on crutches grrr.

I get numbness and tingling in my legs and arms and sometimes feels like creepy crawlies all over.

All the doctor keeps saying is my blood shows is that my inflammation markers are up.

What will the rheumatologist do from your experience in trying to diagnose me?

I'm so sad from the pain and feel old and useless- just want my life back 🙁

Sorry for a long rambled post! Oh lack if sleep! It' either sleep ALL the time or no sleep get

Karina x

20 Replies
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It's horrible to be in your position...all I can say is try to be patient.....as soon as your rheumatologist gets the results & talks to you about your symptoms they will know where to start with treatment.

Nobody can tell you what treatment will be recommended until all your test results are in.

A lot of your symptoms could be caused by anxiety...I erupted with hives when was waiting to be diagnosed ...that all disappeared when my mind was put at rest.

Don't despair tough...most of us here have had all sorts of symptoms like yours which when interpreted by doctors aren't as scary as we thought.

Why don't you phone the rheumatologist ....explain how bad you are feeling & ask if your appointment can be prioritised.....that often speeds things up.

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I don't want to pester them but think I might thank you.

I'm the type of person who doesn't really worry, never try to go to doctors and just get on with it! I have a very responsible job and am a mummy to a 6yr old and feel I'm failing at both right now 🙁

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Sometimes you just have to let go of the reins & ask for help. I know what you mean....I once worked a whole shift with terrible stomach pains...having self diagnosed muscle strain...turned out I had amoebic dysentery & ended up in hospital for weeks!

Make that phone call tomorrow.

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Thank you and hope you'e feeling better ☺ x

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Oh it was years ago..but it taught me a lesson....get things sorted & carry on with your life....we all know someone who suffered until it was too late!

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Welcome Karina,

Sorry to hear you are having such a horrible time of it. Being in a no-man's land with regards to a definite diagnosis whilst feeling awful is very much the norm for lots of us on this forum, I'm afraid. Please don't worry about whether you qualify to post - there is a weird and wonderful range of diagnoses in addition to lupus represented here, as well as 'non diagnoses'.

My guess would be that your first rheumatology appointment will follow a fairly standard format, involving an examination of some of your joints, skin etc plus questions about the things that you mention. I imagine you will also have bloods done - especially to look for anti-nuclear antibodies (ANA) and anti-double-stranded DNA antibodies (dsDNA) and various extractable nuclear antigens (ENA). The diagnostic label you come out with will depend on the exact mix of signs and symptoms you have, and the personal disposition of your rheumatologist. I'm of the opinion that we each of us have our own personal variant of auto-immune disease and that the precise label is of lesser significance. The most important thing is to get an effective treatment.

Hang on in there, and do keep posting here if it helps you feel less alone. We're all in this together! x

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Thank you! I feel less alone and pathetic already being here! Meant in a good way lol it's just sometimes you feel you'going crazy when everyone else is fit and healthy!

Thank you for the info regards the tests- I can at least have some knowledge ie if they don't test for those you mentioned etc.

I was wanting answers before Christmas but I'm getting my head around that not happening- hopefully New Year will bring some progress and 2018 will be better

X

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Hi Katrina, I'm also waiting for a Rheumatologist appointment with similar symptoms. I'm not sure if I will get any answers on my visit. I'm worried and anxious while in limbo waiting. Beta Blockers have helped enormously to calm me down.

All the best.

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Oh no ☹ hope you get sorted too - waiting is the worst I Think! X

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Ksblack hang on in there girl, it's not a straight forward diagnoses. It took two months, two Rheumy appointments, different specialist and a very difficult wait for me. Please listen to my advice, don't make my mistake, don't read to much into your symptoms, I scared myself to death by doing this! I caused more damage by doing this, and let it completely take over my mental state :( just know that your case is being looked into, your GP believes you have an autoimmune disease, And your rheumatologist appointment is on its way! Good luck to you, keep in touch xxx

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Thank you! I'm more worried I'll be fobbed off but think the rheumatologist will have heard it all before so will help and provide some guidance and answers. Just want to know so they can make me feel better. Thank you for your message 😊 x

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I understand, I too went for several years hurting in joints, mussels, etc. doctors kept saying we can't find anything. Then one day about 7 years ago, I went to my dermatologist to have a place removed from my nose. I thought I had gotten ring worm, it was mirrored image on both of my upper arm. I let her look at it to give me something to clear up the ring worm. As soon as she saw it, she said that is Lupus. She done blood work, it came back positive. They then done a biopsy, that came back positive. Sent me to a rheumatologist. They then done more extensive test. Turns out after all those years I have Lupus (SLE).

The Down side to that now is. Everything that is wrong and the doctors don't have a clue, now they will say it is related to or it is caused from my Lupus?

Wishing you the BEST!

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Thank you! 😊

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Hi Karina,

Welcome to the LUPUS UK HealthUnlocked Community!

Flu-like symptoms, rashes, joint/muscle aches and pains and extreme fatigue are all common symptoms associated with lupus. To find out what other symptoms are associated with lupus, you can download or request our free information pack here: lupusuk.org.uk/request-info...

Although you haven’t had a diagnosis of lupus, 90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which contains helpful tips and information: lupusuk.org.uk/pain-managem...

Fatigue is one of the most common symptoms of lupus; it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...

Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem. Rashes can be induced by sunlight as well as other factors which are discussed in our ‘Lupus and the Skin’ guide; lupusuk.org.uk/wp-content/u...

Many people with lupus experience a flare of their symptoms when exposed to sunlight. The most common symptom is for rashes to appear on the skin, affecting areas that are frequently exposed such as the face, neck, hands and feet. We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...

Regular exercise helps to improve sleep quality. Exercise should be done at least a couple of hours before going to bed; otherwise the mind may be too active, making it more difficult to sleep. We published a blog article on exercising with lupus which you can read here: lupusuk.org.uk/lupus-and-ex...

The NHS Choices’ website provides information on sleep hygiene which I hope you will find useful: nhs.uk/LiveWell/sleep/Pages...

There are specific tests and criteria that are required in order to make a diagnosis of lupus which you can read about here: lupusuk.org.uk/getting-diag...

Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .

Please keep us updated, wishing you all the best.

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Thank you so much that's really helpful. I'm hoping I don't have anything wrong but then I actually do just want to know and get then get some kind of treatment- want to be well again x

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Geeee Same symptoms that I had..I was DX'd rather quickly with Sucbutate Lupus...It is eally hard to feel crummy at best..it gets to the point where I did not say anything about my huge fatigue and wrist hips ..flu symptoms with oddly enough, No fever...it was my horrible chest rash that got my drs attention last summer...I asked for a biopsy and it showed Lupus or other possibilities...from there a lot of testing to reach my DX...

Good Luck..and don't let the Drs get away without further investigation

leslie

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Thank you - I've only had one rash since the summer, 5hat seems to have calmed down although I can't wear any if my jewerelly including my wedding ring etc as it sets all my skin off, seems super sensitive.

Hope you'e doing better now! X

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I took 10 mgs of prednisone for a couple of month,s along with Hydroxychloraquine....I have been off the prednisone for about 6 weeks ,and continue to take 400 mgs of the Hydroxy choraquine.....My rash for the most part is gone...but I am extremely sun sensitive..and i do not wear my jewlery anymore...so yes, I am doing a lot better..still get waves of FATIGUE

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Fatigues the worst.....say no to do many things socially and live in pjs as soon as home from work!

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Does anyone ever have problems with work?! I'm managing but boy some days are so so tough. Any experience of how employers deal with a l9ng term illness?!

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