Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I have no idea what rheumatoid arthritis is really, except it is painful and disabling, so I thought I'd look for someone who does know about it. If anyone has some information that they think might help me feel less fearful then I'd really value your help here.
I have been pestering my doctors since last March about the terrible pain in my left thumb. Back then an x-ray ruled out arthritis and I had physio which brought down the inflammation enough so I could use it with care most of the time. The tendons and joint are red and still very swollen (10 months now) even though I eventually left my job so as to rest. I wasn't able to physically do the job anymore, it was in a caf, no-one understood why I left last April, after 6 years, saying I couldn't physically do the job any more. My legs and neck hurt and after 5 hours work I'd fall asleep as soon as I got home, in the middle of the day. I thought leaving work would cure it. Trouble is its been getting worse, spread to my fingers and wrists, I'm hardly going out at all now, even shopping is painful in my feet, pushing a trolley or carrying bags is difficult and I keep dropping things from my left hand. All housework and cooking is so difficult.
Is my intestinal pain connected? Are the clouds floating internally in my eyes part of it?
Apologies, this is getting very long winded, basically I got a second opinion on my thumb just before Christmas, 8 months after the first x-ray and it was arthritis. Does this mean the first x-ray was unclear or does it mean I could be that much worse in 8 months?
Then I went back to my doctor (actually not a locum this time), he gave me a blood test last week, just to put my mind at rest that there was nothing serious, he said. Today he phoned and said there was a raised rheumatoid factor and he was referring me to a rheumatologist. He is actually very nice and would have answered questions, but I had none because I know nothing about it. In the meantime I've to sit tight with my paracetamol and my thumb brace trying not to use my joints while I wait.
At the age of 44 with three school age kids that isn't easy to do, anyone got advice? I did read a few pages online and I see things have moved on since my great grandmother was bedridden for 19 years with arthritis (I assume RA), but I'm scared to be honest. What do I need to know?
I have been pestering my doctors since last March about the terrible pain in my left thumb. Back then an x-ray ruled out arthritis and I had physio which brought down the inflammation enough so I could use it with care most of the time. The tendons and joint are red and still very swollen (10 months now) even though I eventually left my job so as to rest. I wasn't able to physically do the job anymore, it was in a caf, no-one understood why I left last April, after 6 years, saying I couldn't physically do the job any more. My legs and neck hurt and after 5 hours work I'd fall asleep as soon as I got home, in the middle of the day. I thought leaving work would cure it. Trouble is its been getting worse, spread to my fingers and wrists, I'm hardly going out at all now, even shopping is painful in my feet, pushing a trolley or carrying bags is difficult and I keep dropping things from my left hand. All housework and cooking is so difficult.
Is my intestinal pain connected? Are the clouds floating internally in my eyes part of it?
Apologies, this is getting very long winded, basically I got a second opinion on my thumb just before Christmas, 8 months after the first x-ray and it was arthritis. Does this mean the first x-ray was unclear or does it mean I could be that much worse in 8 months?
Then I went back to my doctor (actually not a locum this time), he gave me a blood test last week, just to put my mind at rest that there was nothing serious, he said. Today he phoned and said there was a raised rheumatoid factor and he was referring me to a rheumatologist. He is actually very nice and would have answered questions, but I had none because I know nothing about it. In the meantime I've to sit tight with my paracetamol and my thumb brace trying not to use my joints while I wait.
At the age of 44 with three school age kids that isn't easy to do, anyone got advice? I did read a few pages online and I see things have moved on since my great grandmother was bedridden for 19 years with arthritis (I assume RA), but I'm scared to be honest. What do I need to know?
I am your age with small kids too and recently diagnosed. About 11 weeks into treatment.
What I recommend first is to google The Mayo Clinic Rheumatoid Arthritis description and read the pages for an overview, then come back here and scroll through the various topics to drill deeper. Then I would google RA Warrior and read those pages too.
I have found RA to be totally overwhelming. But I can tell you this it does get better. The onset pain is horrendous but you will start to feel better. It's a slow process figuring out what cocktail of drugs work for you specifically. Your life will slowly return to normal, but a new normal. There are a lot of drug choices for this disease and in tis way RA sufferers are lucky. We have options.
Let the housework fall behind, get some much needed rest and keep talking to our group, your doctor, your family and friends for support. You need it. We all do.
I am sending you a welcome hug through this post. Get yourself a heating pad, electric blanket and some ice packs for the fridge. Enjoy hot baths when you need some quick relief. Try sleeping more upright propped up on pillows or in a recliner -- try to get as much comfortable sleep as possible.
Read as much as you can about RA. This will empower you at a time when you feel so powerless to the pain.
I'm also early 40s with teens at home. But I'm in my 12th year of RA. It's considered severe level since it's in all joints and when in a flare I can't dress without help.
I'm also 2nd generation, my mother's hands twisted just four years after onset of symptoms.
This said, my family is lucky. Mother found the Minocin treatment back in the 90s. Put her in full pain free remission. Minocin was also the treatment I did first and had great success with it (as long as I stayed on name brand) for ten years it kept me at mild/moderate level. I was further blessed to discover during a weight loss last year that my particular case of RA is actually my body's response to foods I've developed allergies too. So now I'm off drugs and in diet induced remission.
There are others here that have found nonconventional success as we are and there are many here who've found a drug cocktail that works for them. Either way we all seek the same goal - remission.
If you are interested trying diet control, the first step is going to an Allergist and getting food allergy tested. Flare foods show a positive result because they cause an inflammatory response in your body.
we are glad you are here.
i was about your age when diagnosed and a single mom with two kids in school that wanted to be chauffeured to the moon and back, sound familiar? :) plus a full time 40 hour weekly and a second weekend job that paid the mortgage, the heat and their activities. i know. inthewoods spelled out the reading and self educating. go for it. full tilt. dont' slow down too much or the disease will own you. you are still you. :)
post away here. we are a nice group. we also use humor and distraction on this site. hope you enjoy our distractions also :)
the crossing over from running your own life to having the lifetime chronic disease added to your plate is a resistant slow one. take your time.
let us know how the rheumatologist goes.
Ros
A question I have is will my memory be affected by the meds? Will I get drowsy? I started a part time degree in mathematics two years ago (when I started feeling I was too old/sore for manual work) and I really need a clear mind for it.
The food allergy trigger mentioned by 2scicrazed sparked my interest as I have been diagnosed with nut allergies and latex allergy as well as a few minor allergies such as mandarin oranges and mangoes. I cannot tolerate milk, so take calcium tablets and all my female relatives (including me) have some problems with wheat products.
I had been wondering about food. If my immune system attacks in the presence of random foods, I thought there may be a link to it starting to attack my joints and maybe my lungs since I have been out of breath a lot in the last few weeks.
My husband's work comes with a good insurance policy so I get to see the rheumatologist this Tuesday instead of waiting months more, for that I am very grateful. Each day seems to bring a new pain right now, we have a new bed on order with the last of my savings from when I was working, lets hope I can get a better night's sleep soon.
What adjustment have you had to make?
RAinthewoods has given you nice suggestions.
take NSAIDs for pain
listen to your body and GO SLOW AND REST IN BETWEEN
i take a lot of breaks during the day and i do only what I CAN
hot showers would help
bengay or icyhot cream or patches for pain
heating pads for neck and back
REST REST REST
ASK FOR HELP
take multivitamin everyday .......... it helps your fatigue
NO DAIRY, NO SUGAR, NO GLUTEN
take a note of all your symptoms and how do you feel
read a lot about RA in google and note down all your questions for your rheumy
so far, this is what i can suggest you until you see your rheumy.
if you are in lot of pain, give your rheumy a call and tell him that you are in pain and is there anything he can prescribe (to your pharmacy) until you see him.
before my first appt, i had to wait 2 months and i gave a call and he prescribed me prednisone which helped my pains before i saw my rheumy.
good luck. take help of your family members in house chores. i started training my toddler from now. she knows that mommy has boo boo and she understands.
You make lifestyle modifications as you go. Again, we all have different levels and symptoms as well as different lives. Though many of us are now forgoing fashion and going for comfortable, well padded shoes. You might not be at that stage yet.
Another thing that is good is an electric can opener and food processor. They'll make your life easier during hand flares.
You have a positive attitude. Go ahead and read up on all possible drug treatments and their common side effects. Decide what you're willing to handle risk wise and what level of symptoms will cause you to reconsider risk vs benefit.
I've been having problems for a while, I stopped gardening summer before last, but its only gathering pace and spreading now, I really want to halt this, my left thumb is only 50% useful compared to this time last year (was more like 20% useful over summer). I'm right handed so that was ok-ish, but my right is starting to swell and ache now along with my finger joints and the outer edge of each hand and sometimes my wrists. I feel I must do anything possible to stop it now or I won't be able to write, draw, paint or a million other things.
Its a shock, in all my visits to the doctors I was told no need for a blood test because it was really only one joint badly hurting plus my neck which was probably unrelated and the obvious attitude was that a sore thumb is not that serious (they ought to try it). My physiotherapist phoned my doctor back in June saying she thought I should be tested for rheumatoid, but the doctor thought otherwise. I really did trust my doctor.
Then I got a second opinion from another clinic, a diagnosis of arthritis from a new x-ray and suddenly they are interested. Better late than never I guess.
I tend to react badly to meds (mostly stomach pains and nausea), but I'll take anything they offer me now if it helps long term.
I was given prednisone about 3 years ago to stop a major allergic reaction, 16 tablets (80mg) in two days, I could have climbed Mount Everest on my own while they were in my system, the swelling and lethargy instantly vanished, then for a few days while they wore off I could barely get out of bed.
I'll keep looking, but I haven't learnt how to navigate this site well (and I have some volumes to find by integration in my maths assignment which I really ought to do first). I haven't found the threads about it yet.
Our cat died of cancer a few years back, steroids turned him into a kitten again for a while, but I've no idea of the long term effects, does the effect wear off with long term use? Do you end up dependant on them? Do they cause diabetes?
I ask the last one because a friend with CF said his diabetes was inevitable with the constant drugs he had to take and his CF daughter would be the same one day. He takes prednisone with a million other meds, I wondered if RA meds also cause diabetes in the long term.
So much to look forward to. At least I'm no longer wondering if I have MS like our next door neighbour or bone cancer like my grandmother did. Like me, she was fobbed off with nothing more than "over the counter" painkillers for a year. Then she was diagnosed a month before she died. At least I'm not just being a hypochondriac like the doctors seemed to think for a long time.
Anyone have a good sleeping position? Sleeping on my front hurts my neck for the next day or two, on my side hurts the shoulder I'm leaning on, on my back my feet are pushed down by the covers which actually hurts a lot.
I'll try sleeping sitting up a bit, I did have to do that when I had a benign tumour removed from my neck 4 years ago. Since turning 40 I've been falling to bits!
Apologies for the self pity, I'm just getting it out here so I can be more cheerful for my family, living with four men doesn't give me a lot of opportunity for talking about how I feel.
On a cheerier note, my eldest son has been offered a place to study medicine after this summer, he will make sure I get the right treatment, even if I have to wait 6 years until he qualifies!
From this support group and people with RA in my doctors lobby I have learned how to adjust my schedule to get what needed to be done (in your case academic studying). For me, after I take my prednisone in the morning I have several hours of feeling no pain and have mental clarity. In the evening as the drug wanes I am not so productive.
Congrats on your mathematics pursuit. You will find ways to accomplish your goals with RA -- mental and physical ones. It will just take some time -- maybe longer than you expected. Maybe not. Everyone's RA is different. Ah, heck a lot of us experience insommnia. I have one friend who is most productive during her two hour insommnia!! LOL!
I will tell you what keeps me going emotionally lately...meeting and reading about people with RA who have found the right meds and are feeling like their old selves again. And meeting and reading about people like me who seem no way near knowing what is going to work for them but know they have many options to try. There is hope in RA.
Keep up your hope factor. It's important. Stay positive. Find the good where you can. Interestingly, RA gave me my love of reading and researching back. Two things as a busy working mother I had little time for. During insommnia I read fiction or research RA. I enjoy it. It's like being back in school for me. I have also emlarged my heart (figuratively). I feel more empathy for others battling all kinds of illnesses. I have made new friends (wonderful ones here on this site). And I appreciate the small triumphs in life. Keep your cup half full at all times and then... When it feels half empty come here and vent honey! We are all here for you. XO
i sleep like when I was pregnant, sort of on my side but with that leg thrown so over on the front that i kind of am not.
remember the dumb birthing classes? that position.
try not to overwhelm yourself you have your entire life for this chronic disease.
have a good tea today
hugs
Ros
You'll learn & more important you've found this group. Support & sharing so your a step a head.
I wonder how many people go undiagnosed?
One XR is no way to determine what's going on.
I wish you the best of luck, take care of yourself.
Sammy
I am from Ireland, but the health system is similar to GB, largely free but slow. I have insurance as well which is how I'm getting seen so quickly, the insurance covers consultation fees then the government cover the cost of meds. So glad I don't have to wait because although this has been grumbling on for a year now with fatigue and severe inflammation in one joint, every part of my body seems to want to join in since new year, and a few before that. Just yesterday my left knee swelled up and then gave way painfully landing me on the floor (unfortunately I landed on my knees too), followed today by my right knee. Today I can only walk if my knees are ever so slightly bent at all times.
7 years ago I was on an elimination diet with a dietician and all sorts of unexpected improvements to my health occurred, but my weight fell to under 100lbs and looking at photos of then I really needed to eat more!
I think food is one of my problems, I've had IBS since I was 17 and allergies confirmed by blood and skin prick tests. I also believe that an immune system that is getting it wrong in one area is more likely to get it wrong in another, I wouldn't say one condition is causing another in my case, but a single weakness could be causing both.
It would be lovely to be told tomorrow that I'm healthy and the blood test was just one of those statistical blips, but I can't see it happening. I woke at 4am this morning with pains in my hands, feet, shoulder, neck, lower back and right hip, all taking it in turns of maybe two at a time hurting. My knees joined in when I got up, but right now, 11.30am, only my hands hurt. I normally would never take a painkiller, preferring a more natural healing etc, but these days I rattle with pills.
I'll post again after tomorrow's appointment, thank you to everyone who has taken the time to read my woes and reply :)