Hello

Alice1
Alice1 Member Posts: 6
edited 3. Mar 2019, 10:57 in Say Hello
Hello. I'm new to this forum and to everything arthritis related. One side of my whole family suffered with arthritis but they were all very much loved but very old by the time I knew them so they are no longer here to ask about these things.
For years I've suffered on and off with hip pain which seemed to appear in the winter only. As times gone on it spread to my knees. Last year though it never went away in the summer. This worried me so I went to my GP. She took bloods and x-rays and said there were elements of osteo and rheumatoid arthritis and I was referred to a rheumatologist.
I waited three months for this appointment and when I got there I was told there was nothing wrong with me and he would see me again in six months so he could discharge me. The only place he said I had osteo was in my right hand and this was only because I told him I had to use writing aids as my fingers fold in on themselves and I drop the pen. He then cast this off as I should realise that everyone has this problem.
He tolde to go back to my GP for NSAIDS which I told him I can't take as I have tummy issues anyway, he couldn't understand what the problem with them was and told me they wouldn't affect my stomach, good job I know better but it makes me wonder how he became a consultant without knowing the main side effect of NSAIDS. He also told me to ask my GP for amitriptyline. This I did and it made me into a zombie, I had no life at all and it also madee feel ill as it drastically in ncreased my blood pressure giving me violent nose bleeds.
It said on the leaflet with the amitriptyline to stop the tablets immediately and see my GP, this I did and I was shocked with the response. She said she'd never heard of these sorts of side effects and said I must've has a bug. I told her that the nose bleed advice was in a big red square on the leaflet but she said it wasn't the tablets. I also told her I'd felt tight chested and felt like my heart was racing and anxious. She never took my blood pressure or listened to my chest. She told me I should continue the tablets but I refused as I felt so unwell and I didn't fancy trying anything else at the time that was similar for the same reason. To be fair they didn't really help my pain and she said she was treating me for nerve pain which I don't really understand. Anyway I've felt much better since stopping them and had no more nose bleeds but I do still feel a bit tight chested.
So here I am now. I have pain most of the time in varying degrees in my neck, shoulders, hands and wrists, knees, hips, ankles and feet. It's worse in a morning in general but I'm woken in the night by my neck and shoulders. I take over the counter co-codamol which has varying effects.
I could scream sometimes when I get in and out of the car especially as my knees scream at me.
On a bad day I feel like I can hardly move for most of the day but I carry on, I go to work, do the shopping, walk the dog, I have to carry on as I don't know what else to do. This can be disastrous as I can become confused and unable to concentrate. I feel like standing and screaming or I stand unable to move and lose track as to where I need to go as I just want to escape to pain and I'm in public and can't do anything about it. I snap at people and I don't mean to but its the pain and confusion talking and the frustration. It's these episodes that worry and frighten me.
I really don't know where to go next. I want to get sorted out but the people I've seen don't seem interested and I feel that they thick I'm making more of this than it really is. If I go back to my GP what do I say, I'm just going over the same thing and she sees to just give me something similar to amitriptyline. The consultant appointment was very bizarre and if I went back to him I feel he would be little help.
I know this has been a bit wordy and I thank anyone who has got to the end. Any advice as to what I can do next would be gratefully received.

Many thanks in advance

Comments

  • moderator
    moderator Moderator Posts: 4,079
    edited 30. Nov -1, 00:00
    Hi Alice1
    welcome to the forums it is lovely to have you here. Youdo seem to be having a really difficult time and your health care professionals do not really seem to be helpling much. Is there a different GP in your practice you could see, sometimes you may find one who has an interest in arthrits and is therfor more familiar with the symptoms and treatments. Also with your consultant is there more than one in the team as this may also help to get another opinion.

    It is very hard when you are not feeling that you are being taken seriously. You might find it useful to take someone with you for support as this may help, also to have a list of questions that you would like toask in order to understand your situation better.

    Unfortunately it can take some time to get a proper diagnosis and treatment plan set up. You might find our section on treatments useful https://www.versusarthritis.org/about-arthritis/treatments/ . Also you might like to talk things through with our Helpline team and discuss how you might broach things with your GP practise. Their number is 0800 5200 520.

    I am sure our members will also have some good ideas and support for you. Let us know how you get on
    Best Wishes
    Sharon
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, your story is sounding rather familiar. In 1997 my left knee began to swell and it kept swelling until 2002 when I had massive surgery to remove all the liquid and solidified gunk. Six months later it began swelling again. My then GP was clueless about auto-immune arthritis even though I was a prime candidate having been born with auto-immune issues. I saw my first rheumatologist in January 2001 who dismissed me saying I was not his problem. By 2002 I was taking my first DMARD (sulphasalazine) and it's been steadily downhill ever since. :lol: In 2011 I was diagnosed with osteoarthritis so the fun continued albeit in a different form.

    Auto-immune issues were on both sides of the family, my mother's side specialised in asthma and eczema (her gift to me) while Pa's preferred psoriasis (his contribution). Both parents dodged these genetic bullets but fired with unerring aim into yours truly. I am now 21 years in and know my arthritic onions but wish I had been far more proactive back in the early days as I am sure things could have turned out very differently. I was used to doctors knowing stuff and helping me, completely unused to them having great gaps in their knowledge and ignoring the patient. Anyhoo, what's done is done.

    What kind of arthritis affected your family? If it was osteoarthritis then a rheumatologist would not be interested but if it was one of the many auto-immune sorts then he should have been. I think there is little doubt that you need to be seeking second opinions and I hope you feel up to doing so: arthritis is a complex condition, it does not only affect the elderly and it comes in more than two kinds. Please let us know how you get on. DD
  • Alice1
    Alice1 Member Posts: 6
    edited 30. Nov -1, 00:00
    Thanks for your replies Sharon and DD.
    There is a new GP at our surgery, my dad's been to him and he says he was very helpful. I've tried to make an appointment with him but he's on holiday until next week so I'll try again then.
    DD I don't know which types of arthritis my family members had, I never thought to ask. It's a bit like doing your family tree, you know exactly who would know but they're no longer here.
    My great gran ended up in a wheelchair and was in a lot of pain especially at night, bearing in mind though that she lived til she was 90 but my mum always remembers her walking a bit funny. My mum has a small amount of arthritis in her fingers, you can see it but it doesn't trouble her so she's never been to the Dr about it.
    My gran kept herself going by riding her bike but once she had a fall she stiffened up and could hardly walk at times.
    Anyway I'm going to be persistent and find someone who knows what they're on with. I know it's not nice to be dismissed by the very people who are supposed to help but at least I know from your experience that others have gone through the same thing and I feel better about going forward.

    Many thanks
  • Alice1
    Alice1 Member Posts: 6
    edited 30. Nov -1, 00:00
    Thanks for your replies Sharon and DD.
    There is a new GP at our surgery, my dad's been to him and he says he was very helpful. I've tried to make an appointment with him but he's on holiday until next week so I'll try again then.
    DD I don't know which types of arthritis my family members had, I never thought to ask. It's a bit like doing your family tree, you know exactly who would know but they're no longer here.
    My great gran ended up in a wheelchair and was in a lot of pain especially at night, bearing in mind though that she lived til she was 90 but my mum always remembers her walking a bit funny. My mum has a small amount of arthritis in her fingers, you can see it but it doesn't trouble her so she's never been to the Dr about it.
    My gran kept herself going by riding her bike but once she had a fall she stiffened up and could hardly walk at times.
    Anyway I'm going to be persistent and find someone who knows what they're on with. I know it's not nice to be dismissed by the very people who are supposed to help but at least I know from your experience that others have gone through the same thing and I feel better about going forward.

    Many thanks
  • stickywicket
    stickywicket Member Posts: 26,692
    edited 30. Nov -1, 00:00
    Hi :D

    I think it's a good plan to see a different GP. He will come to you with fresh eyes and a fresh mind.

    I'm not sure how helpful, or otherwise, it was of the other GP to say you had elements of both OA and RA as GPs aren't really the experts in RA diagnosis but at least you were referred to a rheumatologist who clearly thought it was OA.

    It's difficult because the treatment for OA is pain relief, anti-inflammatories which, like many of us, you can't tolerate, exercise and rest. You could ask for referral to a physio for specific exercises but the pain is just something we all have to find our own level with. Personally I prefer to keep pain relief to a minimum as I reckon the more we take the more we need to keep taking. Plus, it makes me feel somewhat detached from life and I'd rather feel the pain and the connection. It's a personal thing.

    Please let's know how you get on with GP no2 :D
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm the second person in my family to have an auto-immune arthritis the other being my father's brother. The others who were arthritic had OA which is the most common so, medically, nothing special. My remaining family on my mother's side is large, I have numerous cousins who are all revoltingly healthy but some of their offspring are also troubled by what I had as a child viz. asthma and eczema, so perhaps they too will take it a stage a further later in life. The remaining family on my father's side are all fine.

    Modern thinking is flirting with the idea that there could be a genetic factor in OA too but that won't alter the fact that arthritis is not a glamorous disease. Its sheer ubiquity robs it of any status until one has it and begins to learn about the exquisite agony it can bring. DD
  • Alice1
    Alice1 Member Posts: 6
    edited 30. Nov -1, 00:00
    Hello again.
    Just an up date after my GP visit.
    I managed to see the new GP and explained what was going on. He said that as the amitriptyline didn't suit me the only other option was gabapentin. I have been on this for 3 weeks now, first week 300mg, second week onwards 600 mg.
    These have made no difference to my joint pain, in fact I feel worse. The pain is worse everywhere and more of my joints seem to hurt.
    Has anyone else had this with this drug?
    I'm seriously thinking of stopping taking it.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I've never tried gab or amytryptaline as I feel medicated enough with what I have to take. In my experience nothing deal with pain in anything remotely approaching an adequate fashion, learning to ignore it is hard but worth trying to master. Whatever we take will have a knock-on effect on the rest of the body, in my early days I flirted with the stronger pain relief but found living in legal druggy fog was not for me, I preferred to be alert and hurting and still do. Others swear by their gab or amytryp, however, and it is worth remembering that not everyone with arthritis needs a forum to share how well they are coping because they think it's like that for all. DD
  • stickywicket
    stickywicket Member Posts: 26,692
    edited 30. Nov -1, 00:00
    I'm sorry the new GP hasn't resulted in anything improving for you. I've never had gabapentin but my rule with pain relief has always benn that, if it's not doing anything, there's no point in taking it. Sometimes, though, people do that and subsequently realise how much the meds actually were doing.

    I mentioned physio previously. Have you thought of asking for a referral? It can help enormously. It does with me.

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