Shortness of breath, pain in side, GP not interested.

Wivenswold
Wivenswold Member Posts: 10
edited 10. Aug 2017, 06:50 in Living with Arthritis archive
Good evening all,

I've been to see my GP again today and once again left feeling like I wasn't being taken seriously. 18 months after diagnosis the pain has spread up my arms to my elbows and all the way up my legs.

I've recently reported to my GP and Rheumatologist that my fatigue has become debilitating, I'm having spasms in my diaphragm, burning cramp in my thighs and forearms and, today, I finally plucked up the courage to go back to find out whether shortness of breath and a sharp pain on my right side under the base of my ribcage are in anyway related to my RA.

Even without RA these developments are worrying, but the response I'm getting every time is that it's probably nothing to worry about, there could be many causes, see how it goes.

They are they experts but I'm constantly left feeling like I'm imagining everything. I really am not, I want to feel better than this. Has anyone else had a similar experience on the NHS in the UK? Where do I go if I feel like my medical team only really want to focus on the inflammation? One nurse even told me to snap out of it and that I didn't have RA. A swift complaint resulted in a meeting with my GP who apologised but still showed no interest in my comment that the fatigue is in danger of finishing-off my career.

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Wivenswold
    I am so sorry to hear that you are having such a rough time. It can be so difficult when you feel that you are not being believed or understood. Trust your own experience. Fatigue can be completely overwhelming and extremely difficult to manage. It is often misunderstood as being very tired when we all know it is so much more than that. We have a section on our website that you may find useful to read. https://www.arthritiscare.org.uk/living-with-arthritis/fatigue
    If you are not able to get your GP to understand your symptoms is there another GP in the practice that you can see who may be more sympathetic. You don't mention what treatments you are on as it may well be worth going back to your rheumatologist for a reassessment? I am sure everyone on here will also offer you some good ideas on how to move forward. Keep us up to date with how you are getting on
    Best Wishes
    Sharon
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Hello Wivenswold
    Sorry to hear that you are finding it difficult to get help with your problems. It's possible that part of the problem is the way the NHS deals with such issues. If the RA team don't think that your symptoms are related to the RA or RA treatment then that will be as far as their help can go.On the plus side if you see them for check-ups then the problem(s) can be monitored rather than being ignored. In terms of pain and fatigue that tends to be something you would get the GP to help with, but not all GPs are sufficiently interested/up to speed with what's available, in which case it's down to you to find out what options are open to you. I'll throw out a few ideas which may or may not be of use.
    I don't know how you are placed with respect to public library access but mine has a section of 'Books on Prescription' which GPs can suggest for their patients to use, or can be borrowed as usual(which is what I do), but with an extended loan period. Subjects included cover pain and fatigue management, and it's a chance to try out different approaches without paying out to buy the books first.
    Referral to a pain clinic might be of use, or some form of 'talking therapy' - worry about symptoms can make them worse and learning to deal with that worry can be very helpful. Your GP should be the access point. Tipping the balance away from 'controlled by' to 'in control of' can be as effective as (or even more effective than) drugs, but again it may take time to find what suits you.
    Something else to discuss with the GP is VitD levels.If they are low it can contribute to muscle pain and weakness.
    When you are in this situation it does seem unfair that you have to put in a lot of effort to try and find a way through, and it may seem that the medics aren't interested. The trouble is that pain and fatigue often don't lend themselves very well to the kind of 'have condition A give drug/treatment B' that the medical profession likes to deal with, not least because responses to any given approach will vary widely between individuals, and so doctors can find themselves at a loss to know what to do. It also has to be said that GPs, by the very nature of their remit, may well not be up to speed with current thinking/available treatments(the latter also may be complicated by the deadhand of local budgetary constraints) and that can affect what they offer.
    I don't have RA so there may be things related to RA treatment (eg drug side effects) that other forum members can comment on that may be of help. It is very unlikely that nothing at all can be done to improve the situation for you - it may take time though so keep in touch with us for support and encouragement.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    May I start at the end where you write ' the fatigue is in danger of finishing-off my career'. I'm afraid fatigue can do that and has done for some. I applaud all who battle through the fatigue and pain to continue with their work but sometimes it has to be acknowledged that it is too much. Some do fewer hours or go part time. Others change to less-demanding jobs. It's rarely what they want but often what their beleaguered bodies need.

    Docs don't have all the answers and actually much of what you describe is not how I experience R.A. I experience pain in the joints themselves. The R.A. might – and has – travelled to other joints but not to the bits in between. I've rarely had cramp with it either. All this sounds to me as if it might be muscles protesting at overload if you are trying to force them into action against the pain.

    I don't understand the 'spasms' in your diaphragm. Again, that's not my experience of R.A. Actually, it's so not my experience, I don't even know what you mean. The shortness of breath? Have you ever been diagnosed with asthma or hay fever? Everyone I know who has them, myself included, is having to up the inhalers in this harvest season.

    The 'under the rib' pain sounds very similar to one Mr SW had for some time. The GP even did a scan which showed nothing. Mr SW has a large rib cage and we finally concluded it was pressing on the area underneath when he was using his laptop in the armchair or just slumping badly in it. He changed the chair, and his habits, and is now OK.

    How are your blood tests? Is your rheumatologist happy that whatever DMARDS you are taking has the disease under control? (Bearing in mind that 'under control' bears no relationship to 'pain-free'.)

    You sound to be under enormous stress which may well be the reason for much of your trouble. I go back to my original thoughts – is the stress of hanging on to your career becoming a problem in itself? Can you ease up a little? Unfortunately, the medics can do nothing for fatigue. It's something we have to try to resolve ourselves.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran