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12-29-2015, 05:52 PM   #1
KayleighMeek
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Sick of pain

I am so sick and tired of being in constant pain I don't seem to ever have relief from joint pain I have times when it gets a bit better but it never lasts. I struggle putting anything over my feet getting dressed is a struggle, going up and down the stairs takes more effort than it really should and just everyday tasks are made so much more difficult. I just don't know what else to do or try I don't even know what I can take for the pain as most pain meds send me loopy. I am barely sleeping as the pain wakes me so I am exhausted. I have just started methotrexate and I'm sure it's giving me diarrhea and ridiculous headaches plus it's putting me off all food I just don't want to eat.
That's my rant just feeling sad,angry,frustrated and fed up I would love to just have a break from this crappy disease.
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Current meds
Cimzia
Methotrexate

Previous meds
Pentasa, Aza, 6mp, Remicade, Humira and Sulfasalazine
12-29-2015, 05:59 PM   #2
my little penguin
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Are you taking folate with the mtx ???
Ds started at 1 mg of folate a day and then the Rheumo had to up the dose to 2 mg a day

Joint pain
Things we do or have done for Ds
Volteran gel ( NSAID ) but not absorbed in the blood applied to joints and helps with pain
Thermacare hot pack wraps
Swimming as much as possible helps a lot with the pain
Snuggables ( hot packs /slippers / animals etc..)
Tens unit ( does not take all pain away but helps break it up a bit )
Electric heating pads
Body pillows
Hot tubs

Tagging Maya142

You may need steroids until the mtx kicks in ( can take 8 weeks )

Not ideal but it is what it is kwim
Hugs
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DS - -Crohn's -Stelara -mtx-IVIG
12-29-2015, 06:04 PM   #3
ronroush7
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I am so sorry for what you are going through. Sending support.
12-29-2015, 06:15 PM   #4
Maya142
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We use the same things my little penguin does for our girls. Both girls have Ankylosing Spondylitis and the younger one also has Crohn's.

The younger one is allowed to be on an NSAID because her arthritis is so much worse than her Crohn's. Your GI would have to ok it though. It took some trial and error to find one she can tolerate, but we eventually did.

MTX also makes her very sick - severe nausea and dizziness, she was stuck in bed for 2 days every week. We tried 3 different doses and then decided to try other immunomodulators. She has been on Sulfasalazine and Imuran, but Arava was the one that helped the most (in fact, she is still on it). It doesn't help Crohn's though, just arthritis. It is normally used for RA but is sometimes used for juvenile arthritis or AS.

Pain management has also been helpful. We have done steroid shots into various joints. They both have Tens units that help with pain. We also use pain meds if absolutely necessary.

They both have tried a variety of medications for pain - from antidepressants and anticonvulsants like Notriptyline and Lyrica, to opioids like Tramadol and Oxycodone. Being on opioids is far from ideal, but we tried everything else and they were still miserable, so it was necessary. It has really improved my younger one's quality of life. It did take a while before we found the right one and the right dose so that she wasn't too out of it. She tried Tramadol, Vicodin, Oxycodone, Nucynta, Dilaudid and Morphine before we found one that worked well for but didn't knock her out.

Muscle relaxants like Flexeril can also help with muscle tightness or spasms (which can be caused by inflammation). My daughters would mostly use these at night, and only very occasionally.

Besides that, you really just have steroids - we have done oral, IV, and intramuscular and shots directly into joints. Also not ideal, but sometimes VERY necessary.

Heat and ice are favorites at night. My daughter has microwaveable mittens (from snuggables.net) that really help her hands with stiffness and pain.

Hang in there .
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-29-2015, 06:22 PM   #5
DJW
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That's horrible.
I hope you start feeling better soon.
Sending you my support.
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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
12-29-2015, 06:32 PM   #6
KayleighMeek
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Thank you for all the support it really means a lot.
I'm taking 5mg of folic acid two days after I do the methotrexate injection of 20mg but my dr had suggested upping it if needed and taking it over a couple of days something I am going to have to try and chase up. Who knows when I hear back from though it's the most inconvenient time of year to be sick. I was on methotrexate before and I remember it being a good while before I noticed a decent improvement it's just very frustrating.
Both my GI and rheumatologist weren't keen on me going back on steroids as I have only just finished a dose where I had IV then switched to the tablets as I had a very bad flare but it may be something I have to convince them that I can carry on like this.
The only thing I haven't really tried is the tens machine I have never thought of that I will look into ordering one hopefully it can take the edge off. I also think I need to discuss some sort of pain medication preferably not opioid as they are the ones that send me bonkers, I have asked before and not got much of a response but I need something to be able to function. I can't have my partner here all the time helping me get dressed and pretty much doing everything as I am useless at the minute. It sounds like your Drs have been more open in exploring a lot of different options but I guess with the Nhs they have to follow different guidelines for what they can give you for certain medical conditions or they have to take it to a panel and appeal it.
Anyway I am waffling thanks again for the replies it has given me things to think about and maybe I can take some of it to my Drs.

Last edited by KayleighMeek; 12-29-2015 at 06:49 PM.
12-29-2015, 06:40 PM   #7
my little penguin
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Ds has to take folate every day not just shot days
But every day
Makes a huge difference
12-29-2015, 07:22 PM   #8
Maya142
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Have you tried Tramadol? My girls have found it much easier to function on than other opioids. It's weaker and so doesn't make you so out of it. Nucynta or Tapentadol is another one that is supposed to be easier to tolerate and weaker.

You can get Tens units online, but a GP or pain management doctor could also order you one (at least, in the US they can! Not sure about the UK).

My daughter had an AWFUL time with Methotrexate. She spent 2 days recovering every week and the rest of the week dreading the next shot. She'd get SO nauseous and dizzy that she couldn't function.

Have you tried anti-nausea meds with the MTX? She tried both Ondasetron (Zofran) and Granisetron (Kytril). Both worked, but Kytril worked better for her.

Leucovorin, which is folinic acid, is used a "rescue" drug in cancer patients. They are given it after receiving much higher doses of MTX to protect their organs (or something like that!). My daughter took it once a week right after getting MTX and it really helped with side effects. We've found that for some reason, rheumatologists are more likely to use it than GI's.

I'd also definitely ask about Arava.

A GP can probably prescribe antidepressants or anticonvulsants that are used for pain. We do see a pain management doctor and if you can see one, that might really help. My girls have tried Nortriptyline, Elavil, Cymbalta, Gabapentin, Lyrica between them. Unfortunately, they don't seem to respond to these drugs very well - they respond much better to opioids.

Lidocaine patches might also help. My daughter uses them on her lower back.

Good luck!
12-30-2015, 01:57 AM   #9
KayleighMeek
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I have tried tramadol it makes me sweat uncontrollably and sends me into a daze, once I took it and it was snowing I stayed up all night watching it until it made me dizzy and sick. I really dislike tramadol and when I have asked my GP before they have said well there isn't anything else I can offer it was a while back so maybe I could try again with another dr or even the rheumatologist.
When I was on methotrexate before I think I was on omeparol (spelling??) but I can't remember if it made a difference or not. I'm going to leave a message with rheumatology this morning and hope they get back to me soon I might see if I can book a Drs appointment but it may be tricky to get one and also to get to the surgery.
I will let you know what happens your information has definitely helped and I can go to them knowing a bit more.
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