Hi. Diagnosed last week. I was just wondering if anyone else with the condition seen their inflammation markers raised on blood test. GP been monitoring my bloods for a year and the CRP for inflammation has continued to rise even with no infections just drained and in pain. Also not able to absorb vitamin d unless given prescription strength tablets. Even in the summer when I was in the garden every day my vitamin D was extremely low. There maybe no connection and hopefully GP will say fine eventually. Just feels open ended as they say test again 3 months and those 3 months turned into a year. Just curious if anyone else had raised inflammation markers with the condition? I'm trying not to worry about things too much but I'm epileptic and a lot of meds they wanted to try I can't so I'm a little concerned how we will get on top of pain. Codeine only at the min. The pills linked to epilepsy have some effect on my other epilepsy meds and they can't risk seizures again for obvious reasons. Just hope there is a way to manage this. X
Raised Inflammation Markers (CRP) - Fibromyalgia Acti...
Fibromyalgia Action UK
Hi there and welcome, I have read here on the forum that people have had raised inflammation markers when they have been diagnosed, hopefully GP is keeping a good eye on you and will be working on which meds will be okay with your epilepsy, hope fully some members will come along with their experiences, the weekend can be quiet sometimes, always good to see people using the forum , I’ve found it very helpful and people’s empathy and understanding of this condition goes along way just even having a chat xx
Thank you for replying. I have never used a forum before but thought it best to get support from people that understand and going through the same. Yes, hopefully GP will get to the bottom of it soon. I've just read a few people have tried turmeric so will try that. I've read ibuprofen too but I'm allergic. Thanks again and have a lovely weekend. X
It’s a good forum I’ve been here for at least 4 years now it’s properly run and made some nice friends too, yes Holland and Barrett do some good ones, I use them a lot for other products too, especially when promotions on , having an off day, had my 1st Covid jab yesterday, maybe coincidence but feel wiped out so very slow Saturday for me. Quite surprised my age group called by my surgery as 59 (just about , 5mths to go and then 60 , makes me fell old cause my brain is 40 😀especially when I see my little grandboys , take care let us know how things progress for you xx
Will do thank you. Get plenty of rest today. I had the first part of vaccine last friday. I'm 42 but was called early because of epilepsy and other health conditions. I was fine most of the day until early hours of the sat morning when I woke, I felt like I had flu, aches, high temp and shivers and couldn't stop falling asleep on the Saturday but within 24hrs I was fine. Drink plenty of fluids and be kind to yourself today. Duvet day and movies got me through. X
Probably not a coincidence as I felt like that for six days after my covid vaccine. Some people without any medical problems have reported being like this too. Hope you are starting to feel better again xx
Hello and welcome! I’ve not personally experienced this, but as yassytina said, others have. I’m sure you’ll get some replies in due course.
You may want to research anti-inflammatory foods. There are specific foods to avoid and ones that help to reduce inflammation. This article could be of interest: arthritis-health.com/types/...
There are many other ways to help manage the pain aside from meds - pacing, physiotherapy, exercise, mindfulness, hobbies, TENS machines (speak to your GP before using due to epilepsy).
Good luck! x
Hi.... i would ask your GP to check your blood for RA markers.... also to refer you to a Rheumatologist if you are not seeing one already.... no pain killers every worked for me...Vitamin D stores need ‘filling up’ first and then you can go for a daily pill ... also add a B12 supplement as that may also help..
Thank you. Yes I will ask for referral, I wasn't sure what type of specialist to ask for so thank you for the tip. I have noticed my wrist joints are swelling too and this is a new symptom the last few months. X
I had to suggest RA as a reason...I only did so because my nana and mother had it.. GPs (and society generally) have no idea what it is or what the symptoms are which doesn’t really help... good luck x NRAS is a good website if you want to read up on it.
Sorry. RA= Rheumatoid Arthritis
Yes you don’t get inflammation with fibro, so maybe there is something else going on, ask to be referred to a rheumatologist, I was diagnosed with RA and ended up in hospital having a blood transfusion , my inflammation was sky high.
Thank you. That's was my concern that it would be just assumed it was so I will definitely ask for the RA markers to be checked and ask for referral. Sorry to hear that happened to you and I hope you are ok now, or as ok as can be with RA.x
Yes thankfully my RA is in remission now, and it’s mainly the fibro that’s a problem, I’ve also got osteoarthritis.
It’s definitely worth asking for the rheumatoid factor to be checked. But just be aware that you can have RA without a positive rheumatoid factor test 🙃 This is called seronegative RA, which I have. It’s all fun and games!
Hi, as others have suggested, I would definitely ask for a referral to a rheumatologist as it may not be fibro. Low Vit D can cause muscle and joint pain too. Have you also thought about whether it could be PMR? The raised inflammation markers could also be a sign of that so it really needs looking into. Good luck and take care x
Hi There I also have lupus /fibromyalgia/trigeminal neuralgia and have had increased levels of CRP ESR and AlKiline Phosphates for about a year. I am unable to take any anti inflammatory drugs due to being on blood thinners so my doctor has had me on prednisone for the acute pain and tapering down as it becomes more manageable along with trying methatrexate which did not work and now Imuran which seems to be doing a better job.
Take care of yourself and listen to your body.
Hi, This is a long post, sorry about that, but from experience, I have certainly been helped by reading other people's stories on here and also the RLS hub on here. This site has been lifechanging in a positive way for me learning from so many who have travelled this path before me.. So....
I was diagnosed with fibro about two years ago but think I've had it for about 10 (Before then I had horses and dogs and children as a single Mum so was extremely active and kept on top of it all completely). I have always (since early childhood) suffered from restless legs and the awful heavy cramping throbs etc, then developed chronic allergic rhinitis about 20 years ago and then chronic fatigue. I have high blood pressure and am 3 st overweight as I became unable to exercise. The main constant in my life has been STRESS!
Over the years I have been lucky enough to learn to control the fibro instead of how it used to control me. I have also learned the big lesson of giving in and listening to your body and allowing time to come back out of that flare. The flares are now still bad but don't last as long thankfully and most importantly, I know I am not dying and I will feel better.
Long story shortened, my GP is rubbish and I went to a private Dr out of desperation and had a blood test, and I compared that to previous blood tests from the NHS and there are different iron results each time, but my ferritin is always very high (around 298).
My inflammation markers are always high (C-reactive protein) - 11 when it should be 0-5.
I am not medically minded and I know I feel ill, but my GP in South of England just wrote it off saying inflammation is usual and as expected with a fibromyalgia diagnosis. He thinks that because he has offered me various drugs over the years, that he is helping me mange it. No more help.
I realised after years of suffering that I can not tolerate the side effects/augmentation and withdrawal from cocktails over the years - I have never been offered an MRI or further investigation , (I did do an overnight sleep clinic & got diagnosed with sleep apnea, but I kind of knew that anyway, as us with fibro/RLS don't sleep well anyway. I had to push for that referral and also for a referral to neurology but again all they wanted to do was give me drugs. I did go down that road for about 8 years but he hasn't tested for RA, its not been mentioned and I didn't know that's what I should be asking for. I have kind of given up with Dr's and gone down the alternative route.
I have (with advice from the private Dr who was lovely but I can't afford to see regularly) started taking a lot of magnesium, cherry active drink (google it) Ashwaganda and Advanced EPA fish oil along with my blood pressure meds and HRT - I have very limited sugar in my diet and also wheat and dairy (not eliminated as I couldn't). I have carefully and slowly stopped all the pregabalin and rotigatine patches (which was the last combination) and having tried most of what I have read that is offered for fibro, I now feel better than I did at all when I was taking them. I try to do pilates or yoga when I can and that definitely helps me and lastly I take half a di-hydrocodine early evening and the other half when I go to bed. That seems to quieten my muscles a little and helps me sleep. By only having one a day, its not enough to get hooked on.
I really hope that reading the above might give you a little comfort to know that you are not alone on your journey and you can find what's right for you, and don't necessarily think the Dr's have the right answer for you. Listen to your body. You know it!
Good luck and take care x
Thank you for such an open and honest reply. It is very much appreciated. I'm truly overwhelmed by how kind and supportive everyone has been and feel better that there are a number of paths I may be able to take and I will just have to find the right path for me and I know it will take time. All these tips from everyone have helped so much with what to ask and what to consider. I also like the fact that I can try some natural things too. I order the turmeric tablets today so definitely going to give them a try. I just compared my crp results and last June it was 7, then in December it was 12 and today it came back 22.2 . Ferritin is 195 but not really sure if that's normal as they have not mentioned it. I'm sorry it took so long for so many of you to get the care you need, you are all amazing and have given me hope.xx
I second all of what's been said, but want to stress I am astounded that you have high CRP and haven't been referred to a rheum. yet. Are you sure you don't want to change your GP?!
I 100% do want to change now yes. I just kept getting told check again in 3 months and that started last March. Then i was told it can be high because of pain so I said well cant we get to the bottom of all this pain and fatigue. My boss has emailed me and said we have a private company health plan I completely forgot I signed up to it over 10 years ago and he has told me to use it. I just need referral letter to start ball rolling so fingers crossed I might get to see one sooner rather than later. I'm lucky to have the support and even luckier now I have an option to hopefully see someone quicker. X
I'm going through similar nowI was diagnosed with Fibromyalgia 4 years ago, I was instantly skeptical and asked the doctor " what would the blood tests have to show for you to think it's fibro and not fibro " he said literally if there is any inflammation then I would suspect its something more serious and not fibro..
Fast forward 4 years... I finally have my health online so I can see the results.
I was told the inflammation was fine.
My crp and esr has been in the red since 2016 for every single test and there's been a good 7
My crp has been 15 for years
My esr was 27/30s early fibro days and now is 45
Doctors have only just now 4 years later bothered to say with the amount of steroids and antibiotics iv had over the years my inflammation shouldn't be that high clearly not an infection..
And I just did a test 1 month ago after a weeks on antibiotics and steroids for lung problem, and results were 15 crp and esr 44 doctor finally calls and says he thinks it would have been higher if I wasn't on those meds recently so he wants another test doing next week.
Even though they have been raised for 4 years and continue to grow...
From childhood I had pains in my legs I would tip toe everywhere till I was a teenager, I was told my pain was growing pains. I would cry with it..
Then in my late teens the pain seemed to spread up legs into lower back.. I dealt with that till late 20s..
My mother died when I was 19 to cope I became a heavy alcoholic for 6 years I drank copious amounts of alcohol every day I believe I may have masked the pain getting worse or caused damage even
As I began to stop drinking and abusing myself
I had a breakdown and ended up in the local psyc unit for awhile.. they pumped me wirh lithium and quetiapine for 6+ months which made me very sick..
It was after this I started experiencing pain ALL OVER my body.. couldn't touch my skin without it hurting..
But to me this could have been spreading upwards since childhood? That's not fibro!
Or caused by lithium/alcoholism..
To be honest I'd believe any of those over Fibromyalgia as my pain didn't just appear in adulthood and I have the raised inflammation
Problem was 4 years ago they took one look at me fresh out of a stint in a psyc unit and with no form of physical examination or elimination, diagnosed me with Fibro.
Seems to be my local doctors new favourite thing as I see atleast 3 others a 5 min walking distance from my house now apparently have it too..
When I don't take gab/pregab my muscles go stiff, hard, they twist and pull
I yawn an it burns my eyeballs an then the muscles start to pull ( that's how I know irs time for the medication )
My pain is still predominantly in my legs 24 7 and back.. then sometimes top back sometimes arms.. no where else is there pain.
Gained alot of weight the last 4 years been in too much pain to do exercise, iv gone from healthy to wheelchair bound as I can't walk more than a very short distance without my muscles going so tight I can't move and it's agonising. The extra weight doesn't help here.
I have now started bleeding heavy, massive clots, constant.. for 7 months. Iv had a few 2 week 1 week few days off but other than that it's been constant no breaks. My heart is always fast 120 rises to 160 with slight movement, had stomach problems nausea constant, bowl issues had diorea for 3yrs straight now seems to have finally stopped, if I ever need to go for a bowl movement it makes me feel sick, that's how I know I need to go sometimes, and these are why I'm under cardiologist, gastrologist, waiting on gynecologist and I have only just now been referred to a neurologist
But it's hard to remain hopeful of logical life changing answers.. my gp are useless. I think they have got it wrong from go
I was taking 2000/3000+mg gabapentin and double dihy meds just to cope the last 18 months with the pain it did so little..
I finally let my partner sort our new medication for me they've changed the gabs to pregab, but only 100mg upping at 25mg a time every few weeks.. seems awful to me to take 3000mg off someone an only up them 25mg at a time.. when it says everywhere we have researched that I should be put on 150 2 3 times a day at the beginning dose for pain and anxiety. So I'm not sure what there playing at.. plus they refuse to change my dihidracodine at the same time as upping the pregab, even though its been explained that it no longer touches the sides after 4 almost 5 years. Sigh
It's all a nightmare..
I just want to be pain free, have the right diagnosis and then find the best cure or way to cope.. it's exhausting.
I'm 32 and iv aged about 30 years ontop. It's robbed me of my life..
Advice be great..
Do you think I'm right in suspecting it's something else? And has anyone else gone through this.. simular, with another diagnosis etc
Thank you 😊
Ps. Good luck original poster I hope we both get answers soon
Bless you, I'm so sorry to hear what you have gone through. Its so sad that so many people have suffered years without help for this disease. There needs to be more awareness and GPs need to take it more seriously earlier they do. I don't think some realise the impact of long term chronic pain.
I suffered 7 years before diagnosed with endometriosis and by then it was too late. It effected my fertility so much that I couldn't have children. By the 11th operation to keep having it removed as it would spread to organs I thought I'd be pain free after the hysterectomy at age 34. I'm now 42 and still feel low at times that I was ignored for so long and just told painful periods normal but having multiple cycles in one month and loosing for 2 to 3 weeks at a time is not normal. I've just bought a book on living with chronic pain and waiting for the gp call to get referral going.
Thank you for sharing your story, take care.
My mother had endometriosis and it's come up alot online when iv been trying to figure out why I'm bleeding so much etc iv been worried about this with the tissue growth as I had a big pointy mound in the middle of my tummy that's grown over the last few years and serious problems with me right lung.. an when I looked that's the lung it apparently affects. So we may have alot incommon unfortunately for us both..It sounds like what you have gone through is absolutely awful too.. my mother had a hysterectomy afew years after having me at only 23 and it ruined her mentally, she was never the same again apparently.
My partner has pcos and can't have children (I'm unsure or my state) it's definitely a damaging thing to go through, I feel for you.
Keep strong keep fighting until you get the answers you deserve..
And please, do update us regarding the inflammation etc you never know your answer might be mine
(I will also do the same)
hi KMG yes, I have raised CRP too. the answer I get from the doctor is 'they don't know why ' and it's never investigated. and told I can't donate blood. It's kind of a relief to know other fibro sufferers have that too.
Hope you are all OK. Just a quick update, doc has finally agreed something not right and done the referral to a rheumatologist and done new bloods this week so waiting for another set. Appointment on 29th March. I got a copy of referral letter and it mentions she is now questioning fibro due to all the other markers that are raised and not necessarily consistent with fibro. She never mentioned to me it might not be fibro now but im lucky as at least I don't have to wait too long. X
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