Scared

I'm so depressed and frightened. I'm due to see the doctor tomorrow, I had raised rheumatoid factor last week. Been having bad pain and hand stiffness for about a month now.

The last few days I feel generally unwell, sleep is bad, ache all over. Walking is a struggle.

I'm petrified that I have arthritis. I'm 44, and my life revolves around exercise. The way I feel at the moment, I can't do anything.

Could it be something else? I'm tearful at the moment thinking that my life might change because of this.

41 Replies

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  • It sounds like you have some sort off inflammatory arthritis going on but the doctor will be able to tell for definite, if it is then you will get the right medication to help and once your stablised then you should be able to exercise again, look at me 3 years ago I couldn't get out off bed but now I'm on Biologics I'm much better and am able to exercise most days so there is light at the end of the tunnel xxx

  • Thanks for the reply. How did yours start? Do you have many bad days now? I feel like I've aged 30 years.

    What about toe medication and side effects?

    I appreciate talking to you.

  • I would ask to be referred to a rheumytolagist. As it sound like you have some kind of arthritis. I have psoriatic arthritis OA and COPD I can't walk 20 meters without getting breathless but I don't let it stop it from doing things. I exercise and walk every day. Once you get a proper dx you will be put on the right medication.. So you can get back to enjoying your life take care xx

  • Thankyou. I'm going tomorrow morning. I only found out on Friday that I had raised RF in my blood test. Just can't believe this has happened, last week I was still training in the gym. Just hand stiffness at night which has got worse.

    Best wishes to you. 👍

  • Thankyou. I'm going tomorrow morning. I only found out on Friday that I had raised RF in my blood test. Just can't believe this has happened, last week I was still training in the gym. Just hand stiffness at night which has got worse.

    Best wishes to you. 👍

  • Mine started after a golf weekend and my thumb joint was a bit sore, well by the end off the month I couldn't get out off bed, I have failed 3 dmards sulfazalasine, hydroxocloroquine and mtx, I'm now on Benepali a biological drug since last August and take mtx 20mgs along side it and now I'm much better, I still get bother with my hands and need steroid injections every so often and a lot off fatigue, but i pace myself now as I'm medically retired since last July so have plenty time to do things and go to fitness classes most days, I'm 52 and don't think I could be able to work again as I get tired easy , this is a horrible disease to get to grips with but one thing you don't do is let it beat you ,just keep fighting and you will get there and I know some people are worse than others but this site is a godsend as we all know what we are going through

  • You sound like you're coping really well.

    Do you feel good at the fitness classes, well enough to enjoy it? My worry is that I'd be pushing myself through pain just to keep semi fit and prevent heart disease etc.

    I'm trying hard not to think of the worst, but it's difficult not to isn't it? I feel pathetic struggling to do my shoes up, even typing this isn't as easy as it was 2 weeks ago.

  • It's amazing the simple things like dressing and doing shows up etc, I got a load off aids off my occupational health department which were a god send so maybe get in touch with them and when I'm at the classes I sometimes take the easier options when I'm not feeling 100per cent but I feel I'm getting stronger but still cannot do as much as I used too,and a big bonus now is that my family understand how I am now as it took them a wee while to get their head round it as it did with myself

  • HI Markyboy

    I am a 53 and on my bad days you would think I was 73. But once diagnosised with Rheumatoid arthritis finally last October (Have had pain and stiffness for years but nothing ever showed up) I was able to start looking forwards. Dont look at this as a life sentence of not to be able to do what you love and enjoy but as a situation that needs management. There will be days when you wont feel like doing your exercise to the extent that you used to so do some gental exercise on those days or if you have to take a rest. If you are diagnosed with an arthritis the medication will help as will simple life changes. Mine was sensible shoes as my feet are the worst. So now instead of beautiful high heels I wear pretty memory sole pumps. On the occasions I do put on the heels I take pumps with me. ha ha Im not saying you wear high heels but you get the gist. It may be that instead of going for a workout in the gym you do an intense swim using weight. You will find you way of dealing.

    Keep positive we are all here to help and I have personally found this site a joy full of info and sometimes a place to have rant. everyone is really supportive so keep in touch

    xxx

  • Ahh what a great reply. No high heels for me (well, only at the weekends). 😀

    I'm a bit of a worrier, so I'm driving myself mad looking at stuff on the internet. I've not even had a diagnosis but everything is looking like it could be RA. I've found it hard to find anything positive, and most things I read say that it's chronic and will only get worse, that scares me.

    Coming on here has been a help.

    I feel so achy all over and strangely feel a bit sick at times. My hands are very sore at night and in the morning....seem to ease a little during the day.

    I'm also worried about it being a risk factor for heart disease etc.

    I guess I'm thinking too much and maybe it's better to take it as it comes?

    I will definitely keep in touch and will be asking more questions no doubt.

    Thankyou so much. X

  • I was exactly the same. In fact my husband banned me from looking at stuff. RA can be chronic but early recognition means its can be kept under control to an extent I saw all the awful pictures of deformed hands and feet and went into melt down. Then OMG I already have high blood pressure WTF .But with the aid of my Consultant and his amazing Rhumatology Nurse I have a bit of a handle on things.

  • That's good news. Glad you're doing well.

    I think google is a bloody curse sometimes!

  • I really feel for you. I was in a similar situation to you this time last year. I had just turned 40, yet I felt 40 years older. Everything hurt. As people have already said, once you get proper treatment, you can get your life back. Unfortunately I've not been able to get back to high intensity exercise, but am able to cycle, swim, walk, pilates etc. Have to admit, not quite as satisfying but in comparison to this time last year when I thought the pain would never go away, it better than being back there. It's hard, but try not to Google, you'll just give yourself extra stress. Take care.

  • Thanks for the reply. I just feel awful, can't even think about doing any excercise now. I'm walking but that's about it. I miss it so much. I've just walked to the doctors, made an appointment for 9.50. Hopefully I'll know more then.

    Do you feel ok when swimming? I can get a good workout if I swim, but if it causes pain, then I won't be able to.

    Thanks for your help.

  • Hi

    I just wanted to add, that I was diagnosed with RA 3.5 years ago. I considered myself quite fit and sporty before diagnosis and was absolutely devastated by it. I soon discovered that a lot of info online is quite outdated and fortunately treatment is working well for me. I can play tennis,swim,walk etc and have no pain, so yes feel ok when I do these things and can enjoy them. If you do get diagnosed it's not the end of all the things you enjoy, you will just need to adjust a little. Main problem for me now is I get more tired that I used to. Whatever happens, there is light at the end of the tunnel.

  • Thankyou son much. There's not a lot of positive stuff to be found.

  • Mark, there is a lot you can do to help yourself by looking at your diet. Just google diet and arthritis or search on this forum for diet and you should find some things to consider.

  • I will. Thanks for that. Appreciated.

  • Iwas diagnosed withRA 18 years ago at 45.I have had joint replacement several timesand am still working.You learn to pace yourself.Anything is possible if you take time and care but I am banned from trampolines! I still go canoeing with work though.

  • Hi Markyboy

    I understand you being scared, when our life changes due to our health is a tough pill to swallow (pun intended) so to speak. I had to leave my job that I loved to being on disability, cut my income in half, it's been 7 months now. What I did was start volunteering so I fell useful, they understand that it all depends on how I fell when I get up whether I can be there or not. Most places are so happy to have the help whether it's a hour or a whole day. It's ok to feel down it's tough but you have to be strong. By the way I'm 53 and have had 9 orthopedic surgeries since 1994. Just had a hip and knee replacements last year. Diet and exercise really help to even if it's a short walk.

    Good luck and keep smiling 😀

  • Morning. Just wondering how you got on at your GP appointment the other day? Any further forward? Mhairi

  • Hi. I've been referred to a rheumatologist. Waiting times could be 18 weeks. I can't really afford it but I've decided to pay £220 to see one privately at my local Nuffield.

    Should find out today when my appt will be. Hopefully in the next week or so.

    I'm getting mild pain in my knees and elbows now. Hands are more painful, but it too bad during the day, early morning is the worst.

    Determined not too stop keeping myself fit, so I've swam the last 2 days. That's makes me feel better.

    I dread going to bed though, as my sleep is broken and I feel so rubbish in the mornings. Slightly sick and no appetite too. Is that normal?

    I still can't believe I have rheumatoid arthritis if that what it is. It's looking likely though.

    I'm 44, never smoked, male, normal weight, fit. No family history.

    I can't stop getting down about it, thinking I'm going to feel like this forever and it might shorten my life. Sorry for sounding so depressing...

  • Glad you're going to be seen by a rheumatologist. Hopefully this is the first step towards getting your life back.

    It's so important to do things to keep positive and occupied. I found that to be one of the hardest parts of this illness last year. I felt so despondent and don't think I've ever cried so much in my life! Like you, i just couldnt believe it was happening to me! It's really important to keep a structure to your day if you have to go off sick because you feel so ill. I used to go swimming when I was at the height of my flare and found that really helped my mood, and the warm water helped with the pain. Swimming is not my favourite sport so not swimming at the moment. Doing pilates twice a week which I'm really enjoying.

    In terms of sleeping, you could maybe ask your GP for some Amitriptyline if the pain is really interfering with your sleep. It works as pain relief but also has a sedative effect.

    Hope you get on ok with your appointment at Nuffield.

  • Yes I've had tears too. I feel a little sick all the time....just wanting it all to go away. Will I feel like I used to when I get some treatment do you think? I can't bear the thought that the way I feel now is the rest of my life....

    I'm trying to exercise every morning, it's helping. I go to a gym, swim there. This morning I used the bike, and did some light weights.

    I don't want to end up lounging about feeling sorry for myself.

    Thanks so much. X

  • Unfortunately there's no crystal ball to say how you'll be once you start treatment. I wish there was. It fills me with dread that I might have this on and off for the rest of my life. Everyone responds to treatment differently. I'm not back to 100% yet but I'm SO much better than I was now that I've started biologics.

    No matter what you say to people it's almost impossible for them to understand how this feels, and what ot does to you physocally and emotionally. This is why I find these sites so helpful and supportive as everyone knows exactly what you're going through. Take care.

  • Do you have a printout of your blood work to take along to your appointment? It's not unusual for consultants to require additional blood work or perhaps some imaging to rule out or confirm a diagnosis and these can cost a lot.

    Arthritis doesn't necessarily put paid to your physical activities tho' it might need modification from time to time or a switch to a different activity (depending on the variety of arthritis, degree of progression, control with medication etc. etc.).

    Best wishes.

  • Thanks. I've had rheumatoid factor and inflammation ones. Esr? I will actually get that result tomorrow morning, it had to be repeated as the sample was more than 24 hrs old when the lab got it. My crp was normal though. The only thing I've got to go on is my positive RF and symptoms.....

    Might not be RA yet? I'm hoping it's viral or some weird coincidence.......

  • It's best to ask the receptionist for a print out of the results (you're entitled to a print out if you request one - there might be a minimal printing charge but this varies from one practice to another) so you can take them along to the consultant.

    RF, ESR, and CRP sound like reasonable items to test. Do you know what your RF measurement was?

    It's reasonable that a consultant might want to test a number of other things to rule them out or confirm one thing or another. E.g., the antibody test (anti-cyclic citrullinated peptide). People who test positive for anti-CCP are those who are likely to develop rheumatoid arthritis, but not everybody who is diagnosed with rheumatoid arthritis has anti-CCP. Do you think your GP would be willing to authorise this test for you before you see the consultant as it would save you the money if the consultant wants to see the outcome of this test.

    I'd like to think it's just a virus and a blip with uncannily similar symptoms to RA for you and who knows.

    It is frightening to read about RA but a lot depends on the extent of the joints affected and the severity and rate of progress of the condition. If it is RA - a lot of people respond well to the treatments that are available and these are now a lot more aggressive in the early stages so that they prevent the damage that used to be seen with it.

    Keep up with the swimming as it's so helpful to keep a decent range of movement and stamina level.

    Good Luck!

  • Hi.

    My crp and esr both came back today and we're both low. Normal levels. I did get print outs of all my recent blood tests.

    I will ask my gp if he will consider that test you mentioned, I just don't want to come across as a panicking idiot...haha. I do tend to phone the doctors a few times if I'm worried about something.

    Thanks so much for the reply.

  • I wonder why my hands are stiff and sore if I don't have any inflammation?

    Something's going on somewhere...

  • It happens - and there are several plausible explanations which is why you need a consultation.

    Some people do not show obvious synovitis (redness or swelling) yet there is synovitis when examined by an Ultrasound scan.

    I've heard of a number of people with an abrupt onset of stiffness and soreness in the hands that resembles inflammatory arthritis yet, unlike you, all of their blood tests are negative.

    Unfortunately, afaik, although symptoms have lessened for a couple of them, they're still present for all of them, and there's not as yet a diagnosis. (That said, none of these people managed to obtain a referral to a consultant because they're all seronegative and they have CCGs that don't permit appointments to be made with rheumatologists if none of the blood work is seropositive. The GPs are treating them with NSAIDs etc. and waiting to see if anything changes.)

    Can you say what your RF number was (and its reference range which might be in brackets)?

  • Just to say that the NRAS forum here for RA might be helpful for you if you haven't posted there as yet?

    healthunlocked.com/nras

  • Just wondering if you've had any support from your GP or if you've seen a consultant by now?

  • Hi Markyboy. Sorry to hear this but your symptoms have started exactly the way mine did last September. My GP had blood tests done as he thought it was RA but came back negative. He still referred me to a rheumatologist because of the severity of my symptoms and how quickly they came on from being extremely fit and healthy. I was immediately diagnosed with Osteoarthritis. I'm 52 and like you kept myself fit in the gym, led an active life, worked full time with a responsible job. All that has changed for me and it is difficult when your health declines suddenly. For me it has been discovered that my issues are hormonal as I had a hysterectomy 5 yrs ago and was unable to have HRT due to a previous issue. No one told me about the possible issues of this and now 5 yrs down the line it transpires that having had no hormones in my body for the last 5yrs has caused the issues I'm now having including depression. So for me my arthritis is not inflammatory which is unusual.

    I hope you feel better for actually having seen your GP, get a quick diagnosis and the support that you need. Along with the obvious medical support this is a great place to share your experiences and get advice from people that really understand how you're feeling. Stay strong.

  • Thankyou..sorry to hear about your situation....how are you now? Can you manage it, are you able to exercise and sleep etc?

  • Unfortunately not managed at all. But that is due to my circumstances. I had a steroid injection when first diagnosed plus Napraxon, Lansoprozole and Co-codamol. Nothing helped only side effects from the tablets that gave me migraines and nausea, but that is only because my Rheumatologist discovered my to be hormonal. Most problems are flammatory and can be helped with drugs and diet. I'm sure you will find successful support for your symptoms. Exercise is important but has been an issue for me but I am now going into my gym at home and managing gentle walking on the treadmill and gentle use of the cross trainer. If nothing else it helps my mood. So do keep as active as your pain will allow you to at this stage. Good luck and stay as positive as you can, not always easy but there should be light at the end of the tunnel.

  • Sorry to hear you've struggled. I'm sending you my best wishes and thoughts. Thanks so much for your replies, I'll keep you updated on here and will be in need of more

    Advice I'm sure. X

  • Yes, please stay in touch. I really hope that you get an accurate diagnosis quickly and the support that you need. Keep exercising whenever you can no matter how gentle. Take care. X

  • know exactly how you feel. I was terrified of having RA . I knew a lady that had it and she was in a wheelchair. I thought I would be the same. Getting out of bed or getting up from a chair was awful. Stiff body and burning pain, no sleep , depressed . Every nasty symptom I can thing off. Took a while to start feeling better with loads of pills at first and Methetrexate injections. I started to get better slowly and less stiffness .Gradually felt much better. Back to swimming and walking and doing all the things I did before. There is life with RA so try not to worry. You may have another arthritis but you will be ok. Try not to worry you will be fine even though it might take time. Kate

  • Thankyou.x glad you're doing well.

  • Hi Markyboy, very sorry you are having to wait 18 weeks. I am Canadian and live in BC. I was sent to a Rheumatologist within a week of blood work.

    Buckle up because it can be a rough ride. The frustrating part of RD is it variety. No two people respond to drugs in the same way. The doctors will find a combination that works for you. I do feel that people are not being very straight forward regarding excercise . The chances are if you have moderate to severe RD then range of motion and walking will likely be a strenuous as it gets. My Rheumy will not Allah will yoga or Tai Chi for me yet. I do walk as much as I can. Fortunately I am very small so weight has not been an issue for me. Many of the drugs used in treatment of RD make you gain. It can all be very intimidating. Deep breaths and reach out. It is less frightening when you talk to others who have shared a similar experience. Best of luck with Rheumatologist.

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