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LUPUS UK
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Losing my Mind with this pain and not knowing what to do...feeling isolated in this world!

The issues I have are as follows fatigue, joint and muscle pain, dry eyes, migraines, plus sensitivity to sunlight, swollen joints ( especially feet, knees, and fingers and hands), plus several compression fractures in my back from T10 to L5, I also have numbness and tingling in my hands and feet plus my feet like they are on fire sometimes. I had 2 positive ANA tests in 2014 and was diagnosed with SLE, but since then have moved to another state (FYI im in the US),so they redid all blood tests and have had 4 negative ANA tests. My primary basically does nothing and my rheumatology doctor says it's Fibromyalgia and early onset degenerative joint disease which is something you usually get as an elderly person, I am 38 and have been dealing with these issues since about age 23 or 24. I'm on percocet 7.5mg 3 times a day for pain, diclofenec sodium 50mg for inflammation 3 times a day and 600mg of gabapentin 3 times a day for the tingling numbness and burning (max dose of this and it doesn't help). I'm thinking of getting another doctor to evaluate me that doesn't have any past records and just start from scratch and see what they say. I'm miserable and don't know what else to do. I basically am stuck in my house with nothing to do but watch TV because of the pain, like right now for the past week my hands have both been swollen at least twice their normal size which makes it hard to do things. I drop stuff all the time because of losing my grip or muscle control. It's hard to sleep and when I do finally sleep I'm uncomfortable and don't actually have a good night's sleep. Any helpful tips or advice on what to do or say is greatly appreciated. I see my rheumatology doctor next week on the 21st. Thanks in advance!!!!!

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Hi there. Sorry you’re struggling to get taken seriously when in pain. Rheumatic diseases, particularly RA, Sjögren’s and Psoriatic Arthritis can be seronegative. Hang in there and read my latest post for a darkly comedic perspective and to see if it rings any bells. You’re not losing your mind I’m sure 😊

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Hi Aliciasleet. I just noticed you followed me dear. I read your bio you poor thing. Bless your little heart ❤️.

I’m in Michigan myself. Glad to meet you sorry under these conditions.

I noticed our dear Twitchytoes replied to you. Please follow her. She is a wealth of data and has had so much experience dealing with multiple conditions. She’s a true Fibro Warrior.

You have really got your hands full caring for your special needs children and your hubby. No wonder you are having issues yourself sweetie.

By the way I’m 67 and at last count have 60 diagnoses. A lot of autoimmune diseases and the rest just piled on the heap over the decades.

I started being a caregiver age 5 for my mother then 7 for my newborn brother too then my hubby neighbors and in-laws the dog when they all got ill so I’m well seasoned with this topic.

I noticed you mentioned Gabapentin. I’m on it to for neuropathy but it helps my fibromyalgia too. I’m taking 1200 mg twice daily and it’s not the max. I’ve put on so much weight with it. Have you?

If you’re new welcome to the group sweetie.

😊🌸🌿🦋🙏🤗💗😘

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Just to say to you dear Honeybug that a) my settings mean that I don’t want followers. B)Also I don’t have Fibro so can’t be a Fibro warrior?! X

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Forgive me TT. I stand corrected. Well I should have said Health Warrior.

I hope you’re not mad at my mistakes. 😞

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Ha ha well I’ll not say here what I’d say to any doctor who tried to pass me off with Fibro - but hopefully my latest post probably sums it up!!

Sjögren’s Warrior will do nicely as it’s the autoimmune disease that I campaign very actively to raise awareness about.

No I’m not mad at all (how could I be🤗) but just wanted to make sure no misunderstandings here. After that you can be my special agent 🤗😎

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You’re a treasure TT. I have Sjogrens too. So glad you’re not mad dear.

🤗💗😘

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Yes I've gained 70 pounds in the last 2 years but have managed to drop 35 of it since February. I've also had lots of steroids that make me gain weight. The Gabapentin is for my neuropathy issues as well, glad to hear they can increase some more instead of adding yet another medication. But, then again I have been on it for so long I fear that I will no longer work even if they raise it. This past week we have had a cold front move in which has caused more intense pain and swelling for me. How are you handling Michigan's cold weather? I live in the Florida panhandle.

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I don't know that I have any answers but I have a few thoughts.

•Regarding your now negative ANA, you are on diclofenac which is an anti inflammatory med and could lower those results.

• Try creating an objective medical/illness timeline that hits the basic points that are important in chronological order so the rheumy can scan it and then ask questions- sort of an illness resume'. This document can be added to over time to help you remember as time goes on.

• By all means, bring pictures of swollen joints, rashes etc. that are pertinent.

• Write down the top 3 things that you want to talk about in order of importance, but understand that you might not get through all of it.

• Be prepared and keep an own mind! I hope it goes well for you! Don't be afraid to tell him/her you need their help please 😬!

D🏃🏽‍♀️

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I didn't think about the diclofenec interfering with the ANA tests. I will ask my Rheumy next week about coming off for a while and redoing the tests. Thank you!!!

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Me again Aliciasleet

Our dear Twitchytoes just corrected me.

I was mistaken. She doesn’t want followers and doesn’t have fibromyalgia Please forgive me for these errors. However I’m still a cheerleader for TT as she is a wealth of data on health issues. 🤗💗😘🙏😊🌸🌿🦋🙏

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So sorry for you. Get a different doctor. You can't have and not have ANA. Your hands are are too swollen for OA. Where are you in US? I live in Virginia, had great rheumatologist before in Los Angeles. I have some same symptoms, but am much much older. SJÕGRENS, neuropathy, degenerative disc disease, RA in remission, other. You are lucky to get pain meds, percocet helps me but I can't get it any more. Gabapentin at 2700 daily and it has stopped working. You are young and have burdens, you have my sympathy.

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I’m sorry to hear about your weight gain. I’ve gained 60 most of it in the past 4 months. I haven’t been able to sleep in my bed since last December and that has caused pitting edema and the weight gain has really jumped up in the last 4 months. I’ve had 73 steroid treatments since 2012. I’m a mess!!! So many things prevent exercising and I’m on so many diet restrictions I’ve given up as to follow them all I wouldn’t have anything left to chose.

I’m so glad you’ve lost 35 pounds. That’s quite a lot.

Hope you can increase your gaba as needed.

I don’t do well in either cold or hot weather as I have Inherited Erythromelalgia and Raynauds Phenomenon. It’s impossible to find a place that is in the middle range.

The Southeast has had so much bad weather. I recently heard that Tornado Alley made a shift East. We’re now considered in it not just the tail end as before. This might in part explain the change in the storminess your region has had this year.

Oh I’m in the University of Michigan area.

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Good for you with weight loss. I gained 60 lbs on 15 years of prednisone, lost it on low, almost no carb diet, regaining some on gabapentin. Very hard when in pain I know. Neuropathy helped by gabapentin but as you say it does lose its effectiveness. You will get better doctor advice from others. It does seem like you need better control of autoimmune response. I see now you are in Fla panhandle. I have had family there, went to beaches as a child.

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That doesn’t look like Fibro. Definitely get a second opinion with a clean page. Antibodies are only part of the picture xx

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I think you should seek a second opinion. Although the first diagnosis of SLE does seem sloppy (from what you described you did not meet criteria) your current doctor is ruling out autoimmune disease completely. He may be right, but you may just be a séronégative RA patient or have an ill-defined connective tissue disease. This is the big distinction, more than the specific illness. I wouldn’t not take past records, though. The consulting doctor will have to hear your telling of your history. If you don’t have records, he will likely call for them. He needs to see your two positive ANA tests too. Be up front about your dilemma. You were diagnosed with lupus and now told you have fibromyalgia. You want to be absolutely sure that you don’t have underlying autoimmune disease because you are not getting better. In your case it is probably more about medical opinion than running more tests. They likely will re-run the panel, though. I really feel bad for you. You were given the diagnosis of a chronic disease and had to cope with that but now left with a disease that is not well understood and has few treatments. Do get a second opinion.

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I too am in Florida but in the Tampa Bay Area. Just my humble opinion that you absolutely need another opinion. It is sadly still the case that you often have to see many doctors before you find the correct one.

The medications used with Autoimmune disease can be extremely strong and I have found some doctors just won’t go there. I think they are practicing cover-your-butt medicine but that won’t stop the disease. I was told long ago that you need to hit it with meds that are as strong as the illness. It does not appear that’s what’s happening in your case.

It’s been a while now but I saw 4 rheumatologists before I found one who would not just toss plaqunil at me.

Hang in there and keep looking for the best rheumatologist you can find, ask other doctors who they go to. Not who they send to.

Good luck!

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Sorry 4 yr pain! I too have 'fat fingers', clumsy 'oops there goes another dish ' etc, but am doing ok, so don't know how to help you. Only developed RA +ve 3.5 yrs ago but had PMR for 10 b4 that. Pred fattened me up, or rather greed did 4me as it's a biggie for growing yr appetite. Once I cut back [and cut down on carbs especially] i went back to 'normal' 4me.. uk size 16 - 14 on very good days. I have changed my foods a great deal and this seems 2cut the inflammation; little fruit apart from with porage and keffir, meat v rarely but fresh fish often - with veg not carbs tho'. Read recently that 5 no-nos for inflammation / RA are gluten, processed foods/meals but esp meats, sugars, fizzy drinks [even water, its the fizz!!], nightshades eg potatoes, peppers, tomatoes. I also dumped all plastics used for storage or micro - clean jam jars are good for freezing..

sorry fingrs tired, hope this helps; am off painkillers now. good luck x

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Hi I am so sorry to hear that you are struggling so much.

All what you have said is how I used to feel. I felt that I just couldn't cope any more and life wasn't worth living. That was two years ago.. I am still here and still fighting each day as life is precious.

Going to see another Doctor is good.

I decided to work on myself and started with my diet. I did a juice detox for a few weeks and then went gluten and dairy free.

I joined the gym and started off in the pool doing just walking and gentle excerises. Now I am on the gym floor doing weights to strengthen my muscles.

I have RA, Osteo arthrisis it's all over my body, but predominantly in my hands and feet..days go by when I can't do much, but there are days when I am good.

Please don't lose faith in yourself. Our bodies are a living thing and each day it fights to keep us going.

Please hang in there.

Zhee

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