I have RA and am unable to get out of bed anymore

Hi Cynthia, I'm Lori and new to this group. Can I ask what meds you take? I'm desperate to feel better. Thanks.

Melody,

Thanks for shedding more light on your circumstances. I'm sorry you're going through a rough time.

I would suggest that you do these things immediately:

1.  Call your doctor and find out what needs to be done in order for you to have a nurse's aide come daily for  while.

2.  Have your doctor prescribe at-home physical therapy with the goal of you being able to get out of bed on your own.

3.  Seek the help of a psychiatrist to determine if you are clinically depressed. If so, meds may help. [Many people with chronic pain are depressed.]

Being alone all day long isn't by itself grounds for depression. You need to find other ways to stimulate your brain. 

 

Hi Melody, I can empathise with you on being bed ridden. I have been that way a lot over the last two years and I have to take citalopram for depression. I very nearly took all of my pain meds just before I started on them as I just couldnt cope with the pain anymore. I live in a bungalow as I couldnt manage stairs, so the kids would pass my room quite often and I would be crying out for someone to bring me a drink. RA has not been diagnosed but suggested by several health professionals over the years and one consultant from the stroke clinic suggested it just by the results of my brain scan. My rheumatologist dismissed it cos there was no sign of rheumatoid factor in blood tests but there were antibodies, so he has just said fibromyalgia. But my pain mirrors on both sides at the same time. At the moment its my hips and the pain is unbearable and my shoulders and elbows, partipcularly bad through the night when I wake with dreadful pain. I have had it in my feet, ankles, knees, wrists and hands too over the years. My pain relief does very very little, even liquid morphine and I am sick to death of visiting so called specialists and still not having a definitive answer. I am now registered disabled but cannot say exactly what my condition is, just that I am in constant pain. I also sweat a great deal when eating hot meals and drinks. It literally drips from my forehead and neck, as well as night sweats but I know they are more common. It sounds like you are going through torture at the moment and feeling pretty desperate so its good to get it off your chest and don't ever be put off doing that cos it really does help x

Thank you for sharing. I to have thought it would be easier to take my pain meds then to take this pain any longer. They would be more useful for that considering how little they help with the pain. But I have my kids, who are adults now and I have my beautiful grandson. I can't bear the thought of not watching him grow up. When my kids were younger I would feel so aweful when they'd see me crying in pain, they are older now but no one wants to see someone crying in pain. I was mis diagnosed for 2 years before getting the correct diagnoses, by then the damage to my hips was irreversable and extrem. I will keep going to my doctors and am currently awaiting surgery. It's very difficult to get pt at home anymore and they stopped me from going until after my surgery as it wasn't doing any good. IHSS in home support services pays a small percentage of the cost for a friend to help with my day to day needs but I haven't been able to get a nurse again. A nurse used to come years ago but budget cuts no longer afford it they tell me. Some days this all feels so helpless, like every direction I try leads to another dead end. But other days I feel like I will get through this and dead ends or not I will continue to try. Somedays it's easy to focus on the positive other days I can't see past the negative, lol but isn't that everyone's life? Shazzy I feel your pain, I have had to ask my neighbor thru my bedroom window for a drink because no one in my own home seemed to care. Fortunetly I have cleaned house and those days are long gone. I hope things get better for you, if you ever need someone to talk to please message me.

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My kids are older now too, my son 20 and my daughter almost 18 and it seems they just resent me now, whereas when they were younger they used to help me more and be a lot more considerate. My bungalow is a mess as I cant do any housework, and my son, in particular, will not clean up. My daughter does try to help occasionaly. I wont even let friends call around cos of the state of the place. It really gets me down which adds to the stress, which in turn adds to the pain. I have started now with knee pain, feels like there is glass stuck in it, its a really sharp pain and swollen but definitely no sign of anything in it. Its been a very stressful day though. After visiting the vet today, she has said we need to have our dog put to sleep. She has has a tumour now for 3 months and it has suddenly taken over her mouth. I now have to arrange for a home visit to put her to sleep over the next few days. My son is distraught. Jess has been my constant companion for 11 years and I dont know how I can cope. Up until this all flared up again 2 years ago, we used ti walk for hours everywhere and she would come with me every week to my little narrowboat, just the two of us. We lost our kitten just 4 weeks ago too, only 21 months old. He was the most adorable, most loving cat I have ever known and that destroyed me too. He used to jump up and push his head to my mouth several times a night for me to kiss him and I really never minded him waking me all the time, he was just so loving and lovable. Now we have to dig another grave so soon after. I have to have a heart monitor for 7 days, have an MRI and see another rheumatolgy specialist soon, and have an orthopaedic appointment next week when I  am hoping he will inject my hip again, the last two times it gave me 3 weeks pain relief and I felt great, but only for the 3 weeks and he said I can only have 3 so this will be the last. Can I ask what were your first symptoms and how it was finally diagnosed? I have been seeing doctors for 20 years and never had a proper diagnosis, but this all started when I fell down a hole, catching my coccyx on the corner of a grid half way down and damaged my spine and pelvis. I was practically housebound for 4 years with severe sciatica and back and neck pain. My neck regularly went into spasm and I could not lie down and had to sleep on a sunlounger. I was 24 when that happened. I am 46 now. Last night was really awful with my hips I did not sleep till about 5 this morning. Take care x

I am so sorry for your losses. I think it's even more painful when your world has been shrunk to fit in your bedroom. I completely understand about the kids I hate that I have feel guilty for needed a drink or something to eat. It's so depressing looking at messes I want so badly to clean but am in to much pain to even get someone to help. My symptoms started in my toes then fingers. There's a book called Death by Rheumatoid. It is written by a daughter who shares her mothers struggle with RA. You should read it, it talks a lot about RA and the spine. It really opened my eyes to what is possible without being scary. It's very informative and from what your saying about your spine I think you should read it. I found it on amazon for the kindle for only .99 cents US.