HELP !

[jimbo1605]

My wife went from normal to near bed bound, headaches severe pain, breathlessness at the slightest movement and cant work. We have been through respiratory, cardiology, general who all say theres nothing wrong when there clearly is. They are now putting it down to depression - anyone else had a similar experience and how do you get to a diagnosis from an expert - we are in north essex and at our witts end (mental state not place) . jim

[whisperit]

Hello Jim,

It's a terrible spot to be in and you are certainly not alone. There are many others on this forum who have spent years trying to get a diagnosis that feels right to them. It's also in the nature of autoimmune disease that even those who have a diagnosis will get new problems as they go along, often with odd and puzzling features.

Have you seen all the literature that LupusUK produces - there's a the tab on the right of the home page that enables you to download lots of info?

I also wonder whether your wife has been properly assessed for depression, or if it is just a kind of default diagnosis because they can't think of anything else? What does your wife think the problem is? Has she been seen by a rheumatologist? Is there a particular assessment or diagnosis that feels right to her at the moment?

I'm sure that others here, including Paul, will have some more detailed answers, but don't give up yet!

X

[jimbo1605 in reply to whisperit]

Thank you so much for your post - we have our first rheumatology appointment next tuesday so hopefully we can make some progress then. jim

[Hidden]

Hi Jim. So sorry that you and your wife are going through such a hellish time. To me it sounds like your wife needs a referral to rheumatology as the others are often not equipped to recognise an underlying condition such as Lupus or Mixed Connective Tissue Disease or others such as Sjögren's or Scleroderma. Immunology and neurology might be helpful too but a good rheumatolgist should be best placed to determine if there is a rheumatic cause such as Lupus going on here. There is always a cause to symptoms such as these but I'm afraid that too many struggle to find doctors who are decent enough to search on our behalves.

If you read back to my last post about Dr in the House and to Georgie-girl and Barnclown's recent posts about pain management course and about PSTD caused by the ignorance of some the medical establishment - it might empower you and your wife to keep pushing hard for a diagnosis that makes sense to you both. If your wife's symptoms are caused by clinical depression then a psychiatrist's input should be sought to confirm or exclude. They can't just diagnose this condition without further assessment!

There is a lot of support on here for the idea that no one suffers in this way unless there is an underlying cause. Meanwhile it's great that you've come here to help your wife in this way and hopefully others will comment and help you further with their own similar experiences and suggestions. We aren't allowed to give medical advice but we can offer you both support in your quest for proper answers and treatment that your wife can trust.

[Paul_Howard Partner LUPUS UK]

Hi jimbo1605 ,

I'm sorry to hear that your wife has been so unwell. Do you know if she has had any autoimmune blood panels to check for lupus or other autoimmune conditions? Has the GP considered any further referrals such as to rheumatology?

Has she experienced any other symptoms that are common in lupus such as photosensitive rashes, joint pain or hair loss?

[jimbo1605 in reply to Paul_Howard]

Paul, Thanks for your reply. She has joint pain mainly hips, knees and shoulders and a rash on her back. Our GP put her on a course of steroids and the symptoms improved significantly but now she has finished them the pain and breathlessness is back.

We have our first visit to Rheumatology at Ipswich Hospital on Tuesday so grateful for and advice and whether the hospital has any lupus expertise.

Jim

[Paul_Howard Partner LUPUS UK in reply to jimbo1605]

Hi jimbo1605 ,

I'm glad that she has an appointment with rheumatology. Good luck with it. Please let us know how she gets on. If she needs any tips on preparing for the appointment she may find our blog article here helpful - lupusuk.org.uk/getting-the-...

I don't know the names of any consultants at Ipswich but I believe the Regional Coordinator of our Suffolk Lupus Group attends hospital there so he could possibly tell you more. You can contact him through the group's website at suffolklupusgroup.org/

If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

[HRW2017]

Just to add to everyone else's comments, don't be afraid to go back to your GP & insist on more tests. My GP was convinced I had ME &/or depression & it was a constant battle to get test after test until finally Lupus & sjogrens was diagnosed. I really feel for you as the frustration of not knowing & not being believed can feel as bad as the illness sometimes!!

[dk11]

Hi jimbo1605 , I hope this information is helpful for your wife and you as well. As you live in north Essex it would be appropriate to try Spire Roding Hospital rheumatologist Dr. Guy Dabrera .

Private contact details

Telephone[phone]

Private secretaryNicola Rehling - 0208 709 7806

Private secretary fax[phone]

Private secretary [e-mail]

He is one of the most professional, decent and respectful specialist I have meet and I owe him so much rare chance to be appropriate diagnosed as he recommended me to further tests to St. Guy's and Thomas Hospital at Prof. Dr. Khamashta. Dr. Dabrera evaluated my symptoms in 2012 and his conclusions were exactly , which demonstrate to lots of experience and professionalism. God bless your wife with health and strength. May this be a way for you two to find the right path.

[jimbo1605 in reply to dk11]

I would like to thank all of your replies. We have our first rheumatology appt next tuesday and are hoping for a breakthrough.

[Charliebear68]

Hi Jim,

I was just like HRW - ME/depression, in your head...but finding a Dr who will listen is quite a task. I wish I'd found this forum years ago!!

I'm so sorry that you're wife's so poorly but she has you in her corner and I cannot even begin to tell you how important that is! So you need to take care too.

Good luck with the appt - let us know how you get on. Please do read the links Paul has posted - these are invaluable, take notes and don't be afraid to disagree!

Sending you other gentle hugs,

Charlie xx

[spiceyandsugar]

Hi

I'm in same situation as your wife. I'm so sorry it is pretty horrendous illness with totally inadequate help from the medical profession as a whole.

I can hardly walk at times & pain & fatigue & breathlessness is pretty scarey.

My best advice gained from experience so far is:

1. If your 1st appointment with rheumatologist does not go well find one that specialises specifically with autoimmune / autoinflammatory disease straight away. Don't waste your time with a rheumatologist who can't & won't read between the lines. It causes great stress batteling against a rheumatologist who has not got the knowledge & experience to diagnose or believe you. Please don't be alarmed as there are many good rheumatologists & trust me you will know if they dismissive. I against all my will had a 2nd & 3rd appointment with such a consultant & it has had profound effect on my distress levels & flares. I put my foot down now.

2. Give your wife as much nutrition as you can. Smoothies / protein nutrition shakes if she can't face food.

3. Actually go to A & E is the message I'm getting loud & clear from gp & consultant. When she breathless as they have equipment to get to bottom of it while it's happening. Breathlessness should be taken seriously in this setting.

4. Try to detach your emotions from how medics treat you. See it as a process with lots of obstacles but you get there in end.

5. She shouldn't rest before appointments let rheumy see how poorly she is. This is my biggest mistake. But I have to drive self as on own husband can't come so I have to rest in order to drive!

6. Take photos of everything & do daily symptoms log.

7.if they insist on depression get a psychiatric evaluation. I did & he agreed I wasn't depressed. This opened up the door to specialist CFS clinic. The gave me thorough medical review & Obstructive Sleep Apnoea found. Trouble is I now going through whole process again but this time my rheumatologist is a big fan of putting all my problems down to weight & CFS despite the special CFS TEAM telling him it's not.

Im so sorry you & your wife living the same nightmare as me. It's unbelievably hard & like you or someone said worse than the illness.

I wish you the best of luck & pray your wife gets help sooner rather than later. Keep batteling. Don't give up your not alone

Xxx

[jimbo1605 in reply to spiceyandsugar]

I am really grateful for your advice and for your best wishes. I will post how our first visit goes on tuesday and if its not good then I think we will fork out for a visit to the London Lupus centre. thanks once again jim

[Hidden]

Hi Jim, glad you have your Rheumy appointment now. You have been given some very good advice here and as Paul says read the leaflets on offer. When you go to the appointment you will have limited time and want make the most of it. Take photos if you can, rashes, swelling etc. use a diary of symptoms so it is clear the order things appeared and how often they occur. See if you can think of triggers. It just helps to get things in order. They should ask for a family health history and your wifes medical history including maternal. Good luck and keep us informed.