Hi does anyone else suffer with pain, and weakness from the neck down the arms in to elbows and hands, fingers nails curve and Ingrow painful. Tingling numb cold hands lumpy fingers ends. Pain is worse when I rest and wake in the morning. Especially showering and getting ready for work I'm ready for my bed again.
I had a frozen shoulder over a year a go and diagnosed arthritis in my shoulder. I have had two cortesone injections. After Endoscopy I was diagnosed with IBS, chronic Gastritis and a Hiatus Hernia. I have pains in the ends of my toes and in grown toe nails. I often get a crawling sensations in the top of my head always in the same place. Chest tightness breathless quite regular this could be the Hiatus Hernia. I often get the rash shown in photo above. I would like to hear from anyone if these sound familiar. Ive not been diagnosed however my neurologist thinks it may be fibromyalgia and raynauds and have suggested I see a rheumatologist. Does any of above sound familiar to anyone. I would love to hear your experiences. I feel everyone thinks I'm making it up.
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I think seeing a rheumatologist is a must. Neurologists often know little about autoimmune diseases apart from MS. Meanwhile you could ask your GP to check your autoantibodies - particularly ANA and RF and your inflammation markers plus full blood count.
For what it’s worth I have had most of your symptoms for 7 or 8 years and was misdiagnosed with RA and now rediagnosed with Sjögren’s.
Many of us with these autoimmune diseases feel disbelieved by families and friends and doctors and diagnosis can take a long time. Even with diagnosis most people are pretty ignorant - including some doctors. I believe Sjögren’s is the most under-diagnosed but Lupus probably comes a close second.
Thank you for your reply. I really appreiate your words. Now that you have been diagnosed and having treatment do you feel better.
Each morning I get up for work a struggle because I have no energy and it doesn' matter how positive I tried to be I cannot motivate myself anymore.
I feel no one is interested or believes. That includes my husband and my family. I very rarely speak up about my pain, and then when i go to see the doctor they respond i didnt know. I get really nervous when I see a doctor to explain my symptoms because I suspect they thin its all in my head. It can be worrying and anxious, it doesn'3 take much to make me anxious these days but I was never like that.
Three years ago I was a healthy 50 year old until I had suspected TIA and all be down hill from there.
I really relate to the emotional side of your uncertainty. Yes it’s so much better having a solid diagnosis. But even with one we can feel very disbelieved and let down by the medical profession. And I’m afraid I still share most of your symptoms and anxiety about doctors too.
The main difference it makes to me is that I am taken more seriously now by most of my doctors. But I still get labelled as being too focussed on my health and having related anxiety by doctors.
But at least I can do my research now and if I get some Laldy from these twits I can give it back with brass nobs!! (Laldy = Scottish word meaning to sing or do proudly; with great gusto.)
I have many of the same symptoms, i have been seeing Rheumy for years; first diagnosed with Sjogrens and Fibromyalgia years ago then Osteopenia/osteoarthritis 2 years ago and PBC / hemochromatosis! Enough right! I take care of myself more now and stay active eat healthy pray and come on here and other support groups for advice and exchange of information and friendship it realy helps, i came onto the Lupus site because i was told i have many symptoms of Lupus but test negative so i try to keep up on that information so i can keep an eye on myself in case i do have LUPUS. Get a reputable Rheumatologist they will run the appropriate tests for diagnosis and stay positive and strong. Get copies of every test they do and go over them carefully for any abnormals and patterns.
Diagnosed at 24 started with pain in joints and raynauds at 13. Lupus at24 and hiatal hernia also. Drank a ton of Mylanta at the time, which helped. Now take prilosec and that helps.Ignored it too long and developed Barrets disease. Had thrombocytoplenicpupura. Given 60mg prednisone for 2 years. Having incredible pain in legs. Put on Crutches. Doc. said nothing they could do. Actually at time I was glad to have crutches, as it was too painful to walk. The knees and legs and feet he said were very bad shape because of toooo much prednisone. Worked on muscles and prayed a lot. Would exercise muscles above knees and after several years was able to walk without them.. Had spleen removed. Had 3 at risk babies. The risk for me, they said.My children are grown now. I tried to work, but always got sick while caring for kids. My husband is kind and we were okay financially, not easily though.I am now 68 and have more problems. It was hard sometimes with pain and fatique raising kids, but now it is lonely. Most people dont understand it. I get IV therapy every month for rest of my life. I take forteo for bones and sometimes I am on the sofa all day. It is hard when you are young dealing with something that is different from people. I coudnt back then keep up with my age group and still cant. I have tingling in neck and pain in arms ,now and tingling legs. Neuroligist is good to go to. He did testing and MRI, none of which hurt. He found cervical and spine trouble. He was helpful.It is always good to say how you really feel to doc. He put me on a medication that has really helped and no side effects. I always feel fatiqued and week but am a little better at fighting it, since the meds. Hope you get testing. My new diagnosis is mixed connective tissue disease. I also have lots of skin problems. Still looking for a good dermatologist. Steroids doesnt help my skin. Tried everything. hope you find a good doc. for skin. I also have fibromyalgia. I dont worry about that so much as it is not lifethreatening, but good exray, mri and neurologist helped.My rheumatologist diagnosed that. She is my main doc., next to my family doc. The trouble with these diseases is you have to go to so many different doctors, but it is worth it. Finding a good one is important. I have the same one now for 30 years, but that took awhile. Do not waste time on doc you do not like. Take care and thanks for your reading my stuff. Good luck to you. I am new at this support group.
Hello! I had all of these symptoms for several years! I also had the rash but it would come up across my stomach. My one rheumatologist told me that my gyn and I should stop googling! Fast forward almost 20 years later and I'm finally diagnosed with 2 types of lupus. For years they only gave me fibromyalgia and tried to make me it to be depressed.... Pushing drugs on me that I refused to take because of the horrible side effects. I have been through 4 rheumatologist and countless other specialist. My advice to you is do not give up and become your own best advocate. If it had not been for an eventual spot in my stomach, my dermatologist decided to biopsy, I still wouldn't have a diagnosis.... Just a bunch of symptoms being treated. I have been treated for a subarachnoid hemorrhage, a growth on my liver, fibro, gerd, various neuro symptoms, cystitus, and the list goes on.... My point is... See all of the specialists but make sure they connect the dots and treat you as a whole person!
Thank you for your reply you sound lke you've been through the mill and still being very strong.
When I was diagnosed with hiatus hernia. They said I had a fatty liver and a 2mm nodule on my lung which they would like to keep an eye on and re scan in a year to see if there are any changes as they didn't know if it's just started or been there for a while un changed.
Im not over weight and have on average 2 to 3 units of alcohol a week.
Restless legs and arms weirdest feeling that I cannot explain only that I have to keep moving them to feel any relief. Zaps strong electric shock like feelings in right side front neck lasting a second. Ear problems diagnosed with labrithytis 10 years ago. The list goes on. Over the years I've had different symtoms and what I call now flare ups at the time I never thought too much in to it. They would always disappear for long periods of time but for the last 7 to 8 month I have a constant problem with my stomach and aches pains numbNess in shoulders down to hands.
Which has gone from just the right shoulder down in to hands now been both. I just hope the dots like you say will be joint soon and I get some help and understanding from my family as well as medically.
Being referred to a rheumatologist should hopefully give some insight into what the cause of your symptoms may be. To read tips and information on how to prepare for your appointment, click here: lupusuk.org.uk/getting-the-...
It currently takes an average of seven years to diagnose lupus (fibromyalgia can be commonly diagnosed during early stages of lupus). We published an article on our blog discussing the specific tests and criteria that are required in order to make a diagnosis of lupus which you can read here: lupusuk.org.uk/getting-diag...
We are not medically trained here but your description of symptoms affecting your hands and feet does resemble those associated with ‘Raynaud’s phenomenon’. For more information on Raynaud’s phenomenon please read our blog article: lupusuk.org.uk/coping-with-...
Although you have not been diagnosed with lupus, skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem. You may like to have a read of our guide on lupus and the skin here: lupusuk.org.uk/wp-content/u...
It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.
Using an online sociable forum such as this one gives you the opportunity to connect with other people who have lupus/those waiting to be diagnosed. This can help relieve any worries or anxiety that you may have by hearing other peoples’ experiences. We have a lovely community who are always supportive and ready to help!
If you would like someone to speak to, I 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 .
Thank you for all the information you have supplied. This is very helpful. I struggle these days to fine words to express what I'd like to say.
Just to keep everyone updated I received a copy of the letter which was sent to my doctor from the neurologist. Explaining he didn't think I had anything neurologist wrong with me however if we take this in context of her rheumatological complain't, GI complaints, non cardiac chest pain and chronic fatigue. I think this probably does fit together into the CFS of Fibromyalgia line of illnesses with a lot of symptomatology in multiple domains. This is not a diagnoses to be made in the neourology clinic but I do wonder if thinking about things along this line may offer an easier way ahead foe her. I have repeated her autoimmune screen in view of what does sound like a very convincingstory of raynauds. I called my doctor to see if if there had been a referral made to see a rheumatologist to help diagnose. She said she was nor referring me and no further action need to be taken and didn't need to see me. As you can imagine after at last having someone listening and at least believing me and even putting it in the letter I was very relieved. To then be dismissed again from my doctor. I am going to call the doctors early Monday morning to try and get an after 5.00pm appointment after work to see a doctor.
Can anyone help me what questions do I need to ask to help me.
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WHAT LED TO YOUR LUPUS DIAGNOSIS?
Lupus diagnosis yesterday
Lupus and Fibromyalgia
