Rheumatologist discharged me so need advice please

2Seels
2Seels Member Posts: 3
edited 22. Jun 2019, 10:29 in Chat to our Helpline Team
Hi.
I had a referral to a Rheumatologist several months ago. I saw him and I then had xrays, blood tests and scans. Fast forward to now and I received a letter saying I was discharged as tests showed nothing.
Here's the thing.. My physio refuses to do any work with me as I'm in so much pain. My knees have large fluid pads on them. My ankles have small swollen pads on them. The knees give way and crunch so loudly my husband hates walking downstairs at the same time as me. Sitting on the toilet is difficult and painful. The ankles have such searing pain I understand why someone would choose to amputate a Limb. I cannot walk more than a few feet without being in pain. Ibuorofen gel or tablets do nothing. My gp put me on Amitriptyline so I could sleep. My back spasms, my hips hurt when it's cold, my neck and shoulders become so painful I cry and can't do anything. My wrists and fingers hurt and I darent lift pans or a kettle because I'll drop them.
Where do I go from here? I thought at least the consultant would consider options. I have other symptoms he could have delved into.
I feel like I'm losing my mind. This is not in my head. Is this usual? What do I do now?
Advice is greatly appreciated. Thank you.

Comments

  • moderator
    moderator Moderator Posts: 4,082
    edited 30. Nov -1, 00:00
    Hi 2Seels,
    Welcome to the forum. I'm really sorry to hear that you are in so much pain and have not received help that gives you relief so far.

    I'm including a link to the section on pain and pain management on the Versus Arthritis website, just in case there's anything helpful to be gained there that you don't already know or haven't tried already:
    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Hopefully there may be some forum members who've experienced similar severe pain who may be able to offer their thoughts and experiences here.

    Best wishes,
    Ann
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Hello. I'm not one of the Helpline team, just an ordinary forum member but I've had both rheumatoid and osteo arthritis for years so I guess I know my way round the block.

    Rheumatologists only deal with autoimmune forms of arthritis such as rheumatoid and psoriatic. It is GPs who deal with osteo. When your rheumatologist wrote that the 'tests showed nothing' I'd guess that he meant they showed nothing to do with autoimmune types of arthritis – his area of expertise. The x-rays might well have shown osteoarthritis changes but that's not something he would deal with.

    Unfortunately, some people do get widespread OA (osteoarthritis). There are many ways of dealing with it but most of them are up to us. The GP can prescribe anti-inflammatories (There are others besides ibuprofen) and pain killers (What a misnomer!) and refer us for physio but that's about it until / unless we need a joint replacing. I've had hips and knees replaced very successfully. My ankles, wrists and other bits have fused themselves. We ourselves can make lifestyle changes such as ensuring we eat healthily, keep to a healthy weight, don't smoke and do exercise.

    The latter must seem cruel when you are in a great deal of pain but exercise keeps muscles strong and strong muscles support our joints so that they hurt less and stay better for longer. My husband currently has a hip which is bad enough to be replaced but his regular golf, walking and gardening enables him to carry on quite well.

    The thing about pain is that, in 'normal' life, it tells us there is a problem to be fixed. With arthritis, there is, indeed, a problem but it can't be fixed so we often have to push on through pain and find our own 'normal' and our own limits. It's not easy.

    Gels are quite mild things on the whole. Ibuprofen, and other anti-inflammatories, need to be taken regularly for best results but they also require a stomach-protecting med. It's good that the amitrip helps you to sleep at night. It's always easier to face the day after a good night's sleep.

    As for lifting pots, pans, kettles etc – I'm afraid many of us have had to make lots of adjustments such as lighter pans and kettles, using a light steamer rather than a pan for vegetables (healthier anyway and the veg taste better) and learning how to pick things up using two hands. Our slow cooker is my husband's. I can't even lift the lid off :lol: Also I find meals that can be broken up into bits for preparation are good so that I can rest in between bits. Salad is both perfect and healthy but lasagne, cottage pie, fish pie and what my husband calls my 'oven stir fry' (same as a normal one but no need to stand and stir while it cooks :D ) all fall into that category.

    You ask where you go from here. I'd say back to your GP who will be able to explain about the consultant's letter and possibly decide if your “other symptoms he could have delved into “ need attention. I would urge you to try and persevere with some exercises, preferably under the physio's guidance. Take some pain relief about half an hour before starting them. The more relaxed you can be the easier they will be to do. Little and often is best, especially at first. And, when things are bad, only do range-of-movement exercises. Do strengthening ones when things have eased up a bit.

    I hope this helps a little.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • 2Seels
    2Seels Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you very much for your reply. I spoke to my gp. It is clear I have Osteoarthritis and Patellafemoral osteoarthritis apparently. Its possible I have sero negative rheumatoid, according to her but she will keep an eye on my symptoms.
    For now they are treating the Osteoarthritis.
    I really appreciate the replies. It helped a lot. Thank you.
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello, I am not a Helpliner either, just an ordinary forum member with psoriatic arthritis (which my GP ignores) and osteoarthritis (which my rheumatologist ignores). Regarding the toilet I strongly advise you to buy a raised toilet seat or seat with a frame, mine is a boon - it goes on holiday with me.

    Pain relief merely dulls the sharper edges - the TV ads portray pain as a minor inconvenience but that is not the case for people like us. I take a small but regular dose of my prescribed pain relief which does enough for me to get on. I also believe in resting often during tasks and employ distraction techniques to take my mind away from what it going on. I began when I was 37 and am now 60, being in pain is a way of life and always will be thanks to having what I have. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • helpline_team
    helpline_team Posts: 2,090
    edited 30. Nov -1, 00:00
    Hi 2seels,
    Thankyou for posting on our helpline forum. I’m sorry to hear you are in so much pain.

    Ann, Stickywicket and Dreamdaisy have responded with such helpful information and suggestions, there isn’t a great deal more for me to add. I am glad to see you have gone back to the GP for further advice and they are monitoring your symptoms. It could also be worth speaking to your GP for a referral to a pain clinic. Pain clinics offer a wide range of treatments and holistic support and they aim to support you in developing self-help skills to control and relieve your pain.

    If you want to give us a call on the helpline to chat things through informally and in confidence, our number is 0800 5200 520, weekdays 9am-8pm.

    Best wishes,
    Claire, Helpline Advisor
  • Mike1
    Mike1 Member Posts: 1,363
    edited 30. Nov -1, 00:00
    "Pain killers" are useless, I have OA and a number of other problems and have been through the whole range of them until I was prescribed Morphine and discharged from the pain clinic. My GP allows me to self-prescribe basically, I take a set amount of slow release morphine tablets twice a day and then top up with Oramorph during the day as and when I need it - all it does is take the edge off - if I need more morphine during the month it is given to me. Distraction techniques seem to help with the pain.

    As to the problems you have around the home get a home assessment from an Occupational Therapist. Councils normally have departments with OTs - mine is called "Home Solutions" - they will then assess you in your home and can not only make recommendations for adaptions and equipment to help out but often provide them too. I have had a wet room installed, a WC put in that is higher than a normal one, recliner, perch stools etc.
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    You're very welcome. I think things are going as well as possible in that you do have a diagnosis of osteo but also have a GP who is very aware of possibilities and who will therefore monitor you for any signs of an autoimmune arthritis.

    I hope that you can get on top of the pain and I hope very much that Mike1's (another forum member) suggestion of morphine is a looooong way off. I've never taken it except post-op. Mike1 has very usefully pointed out the help and advice available from Councils' Adult Social Care departments. With luck, the structural adaptations he suggested will not be necessary at the very least for some time but are definitely worth bearing in mind.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Nick
    Nick Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi I am a regular sufferer, not a member of the team. I have Psoriatic Arthritis and Ankylosing Spondilitus. Without medication at all it sounds like what you are going through.

    I started with the odd joint an then bam! One day it was like Id been hit by a bus, I could not even lift my head off the pillow as it felt like my neck would snap, but laying there the pain was equally awful, it even hurt my ribs to breath. I remember just wanting it all to end I had never felt so utterly defeated and so wracked with pain from my toes to my head.

    I wondered you said about swelling in your joints, did they drain the fluid from them and test it?

    Its my understanding that PA is very hard to diagnose. I just wanted to say that even though now I am stable. I still get pain and problems but I am glad I didn't throw in the towel and that things can get better. I wish you well.
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