After visit to rheumatologist, I'm left feeling hopel... - NRAS

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After visit to rheumatologist, I'm left feeling hopeless.

Barb66
Barb66
19 Replies

I saw the rheumatologist, he's prescribing me hydroxychloroquine, while telling me that the DMARDS dont treat fatigue and that I have no inflammation evident - neither on examination or in my bloods, so my pain and fatigue cant be due RA. So Im left feeling pretty hopeless - any thoughts/ advice please

19 Replies
oldestnewest
chook

Get a second opinion

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Barb66
Barb66
in reply to chook

Just what I was thinking thank you 😊

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sylvi

I agree with Chook get a second opinion and ask about Fibromyalgia as well. xxxxx

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helixhelix

Strange tho' it seems you should also look into exercise. I can just imagine you shrieking at the screen "how stupid, I'm exhausted just living, how can I possibly exercise!!!" . Well there's a lot of solid stuff that shows that it can really make a difference in improving fatigue levels, particularly if you end up being diagnosed with fibromyalgia as well as RA. It can also help you sleep better, which is crucial, as well as improve bone mass and strength. I have found my RA much more manageable since I got into an exercise routine. Nothing excessive, just Pilates and walking (and swimming in summer). Here's a link to an NHS page about it.

nhs.uk/Conditions/Fibromyal...

I can imagine that you do feel a bit hopeless having had such an unsympathetic consultation. But don't feel defeated, as that just hurts you more. Maybe try to get a bit determined that you'll crack this.

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scorpiojack

Yes I do strongly agree with the exercise theory. I am a keen cyclist, hill walker and swimmer and after exercise I feel really good. I know its hard if you have never been into exercising, I have always been very active from childhood onwards, so when I was diagnosed 2 years I vowed to get back to some kind of fitness. I'm on bios so at the moment I'm feeling pretty good and quite fit, but then as we all know on this site, everyone has different levels of RA and react differently to the various drugs.

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oldtimer

What a negative consultation! I would agree with helixhelix about looking at exercise, as it is SO important.

You can look at your diet too, but don't go overboard with some of the more extreme things that you might see - find at least two pieces of independent evidence for something helping as there is a lot of rubbish out there about diets. (And a lot of it profiting people from others people's illness and distress).

You could also look at psychological techniques which help, like positive thinking, mindfulness, and cognitive therapy, although sometimes I think they just help me not to feel so bad about feeling fatigued!

Look at planning your day, google the spoons theory, and give yourself time for yourself.

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cathie

Id say exercise, even a little helps. And try to get out of the house regularly and get light. I find that helps in all sorts of ways, psychologically as well as physically.

And I agree with people who talk about pacing yourself could you break up tasks, like preparing meals into segments so you can rest in between.

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Joy_1

Good grief, what a thing to say!

I initially did not experience any fatigue for about 1 year after being diagnosed with RA. Then it hit me like a train.

I asked my Rheumatologist about it and he said "I am really sorry Joy, fatigue is one of the symptoms of RA. We don't really understand why and we have not worked out how to solve it. Think about it this way, each day internally your body is fighting the equivalent of flu and this leaves you exhausted".

I am on HCQ and MTX. The first DMARD, Azathioprine did not work. But after around 6 to 8 months of taking MTX the fatigue and brain fog lifted suddenly over a 48 hour period! As I have said before on this Forum it was as if someone had suddenly switched the lights on again!!

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Barb66
Barb66
in reply to Joy_1

well there's hope for me then as I've been taking mtx for 5 months so fingers crossed....:-)

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Frankiefarr

Your rheumatologist is talking pants. Fatigue is a symptom of both the illness and a lot of the medications. My rheumatologist is very clear on that. I find the fatigue the most stressful thing about it and completely debilitating. Some of the worst fatigue I had was as a result of the hydroxycholquinine

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Barb66
Barb66
in reply to Frankiefarr

Thank you I love that sentiment. I'm going to join a local arthritis charity see if there are any kind helpful rheumatologist in my area x

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caron6056

Hi, I was diagnosed with RA 4 years ago, and since then have developed Fibromyalgia and sensory motor polyneuropathy (not diabetes related). I have struggled to get advice from health professionals, who pretty much shrug and say nothing more to be done. (I am on methotrexate/hydroxychloroquine/amiltriptilene - stopped taking gabapentin due to side effects and it didn't really help much, stopped taking naproxen for same reasons). I couldn't do much, was in lots of pain, and so tired all the time.

I decided I couldn't carry on as I was so started doing a bit of gentle exercise, it hurts but pushed on as much as possible. Pilates has also helped with movement and balance. I also looked at diet (I had put on a lot of weight) I have followed a long term eating plan which lowers carbs initially then reintroduces them slowly, keeping sugar low and eating clean healthy food, and this has also helped me. Still struggle but better than it was!

Good luck!

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Hidden
Hidden

Sjogren's disease will show many of the same symptoms, except no join inflammation. It can cause widespread muscle pain, generalized and moderate to severe fatigue, dryness in: eyes, mouth, nose, skin, bowels, vaginal area. Like the others, I would recommend another opinion.

Also, keep a journal with what you are feeling, where and how bad it is on a scale of 1 - 10 (1 is little tiny and 10 huge), and for how long. Then you can take that with you to talk to your doctor.

Be sure to list out as well what you are eating, drinking, and doing so you can see if there is any correlation to your symptoms getting more severe, like wheat, or dairy. Remember correlation does not necessarily equate to causation, but you might begin to see a pattern..

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GranAmie

OK BUT

1. second opinion

2. U can be sero negative to RA etc but still have the fstigue and apin.

3. Odd, but gentle walks, swims, tai chi may all help.

4. Diet? I'm doing a rotation elimination evry 4 wkks:

a.processed food and no alcohol

b.gluten free

c. dairy free

that's as far as am but had shock on dairy!! after 2 wks weakened, had a ploughman's sarnie AND a Snickers - any boy was I ill - sinuses, darrheoa, feeling sick and stabbing pains.

Food for thought? worth tryng tho ! hang in there and good luck x

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AllyWelshDragon

How awful! I found changing my diet helped with fatigue. I was overweight by two stones so I started slimming world to deal with that and found it improved my energy levels. I started Pilates at the gym too as it's gentle and you can start slow and build up. Now I do step classes and running!

I'm taking MTX and salazopyrin and that works well for me, thank goodness.

Don't lose heart, just start with small changes and as the others have said, get a second opinion!!

Best wishes

Ally x

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Barb66

Thank you everyone for the boost, such good ideas xx

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JEM95

I prescribe a dog!

I have felt so much better physically and mentally as a result of getting my gorgeous cocker spaniel 18 months ago!

I walk at least 5 miles a day with her (rain or shine) / I used to struggle with a few hundred yards. It has helped so much with my general fitness plus my sleep too - I sleep better.

Another thing (my GP tested for and suggested) is I take a vitamin D supplement. I was short of vitamin D which may have contributed to fatigue.

Obviously vitamin D supplements are easier (and less costly) than getting a dog!

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Barb66
Barb66
in reply to JEM95

A dog's my retirement gift to myself next year 😊

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Hidden
Hidden
in reply to JEM95

Hi JEM95 - A dog would, in my opinion, help ANY condition! ha ha - What wonderful creatures.

I have a marvelous kitty - she doesn't go on walk with me, but she makes bread on me and has the most marvelous two level purr...

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