12-10-2009, 03:24 PM #1
Can IC cause body aches and muscle painAdvertisement :
I have had IC for 10 years now. I am turning 30 this year and feel as though I am falling apart. I started getting real fatigued about 7 months ago. I talked with my doctor and discussed Dex options. I was put on Dex and the fatigue got a lot better. Everything got better no major flares, only getting up 2x a night, normal energy, lose IC diet. Then about 3 months ago I come down with Swine Flu. After two weeks of no improvement, I went back to my primary doctor and was told I had Mono on top of that. I was in recovery stage and no longer contageous.
It has now been 3 months and I still have burning muscles, headaches, nausea, vometing, irritable bowles. My muscles burn and are hot to touch in the spots that hurt. Have spots on my shoulders, arms, legs, neck, back. They seem to be in isolateded areas. Not my whole arm, leg, or back just spots. To me this is not a burn or an ache like flu. I hurt and I am very tired. I sleep at night only up once or twice. Go to bed early. Take my kids to school come home and try to take care of my 4yr old. It is all I can do to stay awake. I catch myself having him wake me up and me trying to pry my eyes open. I sleep all through the day. Then again at night. I will do this for 4 or 5 days then might have 2 or 3 good days where there is no pain and I feel fine. Then right back to hurting and tired again.
Is this associated with IC??? Does anyone else have body aches and pains other than just the bladder? I am so tired and just do not know where to turn. My primary doc says it is the Mono and I am just stressed and need to relax and rest. She says it could last 6 months or so. I don't feel like it is the Mono but I could be wrong. I have an apt with my Uro in the morning. Well my doc is out of town so I am seeing someone else in the same office. Anyone have any suggestions?
So Tired and Desparate for Help!
12-10-2009, 04:44 PM #2
It is actually more common than you know. Often times people with IC find out later that they have Fibromylagia as well. My urologist said that seem to go hand in hand a lot. Fibromylagia is a nightmare that I have been dealing with for the past 6 years. I began to think I was falling apart as well. I thought you gotta be kidding me here. First my bladder, then I get IBS and now Fibro. I felt cursed (still do to be honest).
All the things you have described are very common with Fibro and its all due to nerve pain. Its why my Oncologist suggested that I go on either Lyrica or Neurontin because they help with Fibro pain and IC pain at the same time (all nerve related pain). I am in the throws now of trying to get approval for Lyrica though Neurontin is OK. It knocks it down quite a bit, but it has its trade offs (I want to see if Lyrica works better for me in some way).
Oddly enough, some have gotten a lot of relief by using OTC (Guaifenesin). That's what Mucinex is. I use it as well and it does help a bit. Its been known to help with Fibro and Fibro like pain. If you google it you will learn more about the Mucinex (Guaifenesin) protocol.
Now you're case sounds complicated because you had Swine (I am deathly afraid of getting that because my immune system has been in the toilet since my breast cancer). That may have been the thing to turn you more autoimmune and here's something interesting. I was told I had active Mono (Epstein Barr and full on Mono-both) 7 months ago when I was feeling run down. I told my GP that even though it shows I am actively suffering from Mono, I bet its been this way for a while and sure enough we just ran new blood work and it still shows I am actively suffering from Mono. I am not surprised because I just feel like my whole body has become completely autoimmune and seems almost suspended in this state. One autoimmune problem can absolutely set off another. Your Swine may have set it all off, but you should be seeking help from your doctor on this. I would insist that they run more blood work and check your white cell count along with a full kidney and liver profile as well as thyroid (TSH level) and Vitamin D levels (which can drop significantly during illness causing more severe symptoms). It qwould also be a good idea to check your cortisol levels. My Vitamin D level was 8!!!!! They could not believe it. Still trying to get it up to where it should be.
I would also ask for a referral to see a Rheumatoid specialist and have them check for the rheumatopid factor and other tests that all affect immunity to see where you are at. Those spots would make me nervous and if it means seeing someone new, do it. I don't feel that's due to mono either to be honest.
I would not wait on this at all. Make sure you get in to see someone immediately and let them see the spots and tell them that you do not feel this is mono and that something needs to be done here.Medical Conditions:
Polycystic Ovarian Disease
Breast Cancer survivor
Monthly Vertigo (near periods)
Neurontin 300mg-600mgs per day
Librax (lifesaver) as needed
Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
Azo Cranberry 3 tablets per day
Cipro as needed to keep UTI's at bay
Xanax 1mg at night for sleep
Levothyroxine 1.75 per day
Prevacid 30mg's per day
Zantac 150 mgs per day
Mucinex 600mg's for Fibro
Diflucan 150mg's after each period
Goldenseal to keep UTI's at bay (it works)!
Prelief as needed
12-10-2009, 05:31 PM #3
- Join Date
- Jul 2008
I also have joint/body pain (have had many major joint surgeries) and generally have that "I am falling apart" feeling.
In addition I have asthma, all along with IC for the past 8 years. One person can't have that much wrong with them, can they??...in my opinion, this is all somehow related, either as an autoimmune issue, or in some other way. Anyone else have this problem, or have any thoughts on this??
12-10-2009, 05:52 PM #4
It is VERY common for people with IC to also have Fibromyalgia..I had Vulvodynia first then 4 years later was diagnosed with IC and then a year later Fibromyalgia.. What you are describing sure sounds like it.. Here is a link that explains it..
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
Diet Reference Sheet:
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
12-10-2009, 05:57 PM #5
- Join Date
- Jul 2008
Well, that sure sounds like me! All I need is to add one more diagnosis to the list. Have had IC for 8 years, but just had my first hydro last week. Pretty shocking to actually see all of the bladder damage in color photos. Glommerulations, ulcers.....lovely! More medications than you can shake a stick at.....urghh!!!
12-11-2009, 07:04 AM #6
I don't have fibro, but i have a dear friend (who is almost like a sister) and she has it, sounds like you do; need to get this check out.
You can't win for trying, between all of our illnesses and medications....I just got back from my PCP doctor office (I see him on a regular basis because of all of my health problems) and he just put me on a new medication. I don't know now how many I am on now, but this one is on "as needed type".
12-18-2009, 08:34 AM #7
Ok Doc Says:
Doc says she is leaning toward Fibro herself. All blood work come back good. Urine was postitive so got Levquin for that, and VESIcare for bladder spasms. She prescribed me Cymbalta 30 mg for a week and 60mg after first week. She also set me up for counsiling to rule out depression. Which I don't think that is the problem. However, I think I have to go there before being set up with Rheumatogy. Not sure how that works anyone else know?
I am on my 2nd week of the Cymbalta. I have been very tired and still hurting. I did read where some people have to take it at night due to being drowsy from it. So I did that lastnight and seem not to be nearly as tired today. However, I am having trouble sleeping at night. I can't get comfortable. I feel extreemly tired yet too tired to go to sleep. I also have these twitches...legs arm muscles just jumping. I think due to the Cymbalta because I was not doing that before. Not sure if that is normal or not. I have not seen much difference since starting the Cymbalta other than this awful taste in my mouth. Anyone know how long it takes to work? I have heard 2 -4 weeks.
12-18-2009, 09:22 AM #8
12-19-2009, 07:27 AM #9
Yep, sounds like my symptoms. I was d'xed with FM, CF IBS shortly after my IC dx's. They all go hand in hand!!
hugs and blessingsMARY
Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....
12-20-2009, 04:51 AM #10
Me too!As I think, so I shall be....
I have had IC for 4.5 years now. I also have fibro, sjogren's syndrome, and vulvadynia. I live in immense pain. I often daydream of life before this demon . When I feel good, I embrace it with all of my heart! I pray that someday I will feel 100% again, we all deserve it!
Vicodin (as needed, so daily!)
Percocet (morning & night)
Klonopin (.5 mg at night)
Zanaflex (2 mg each night)
Thyroid med for low thyroid (hypo)
Vitamin D (4000)
IC, CFS, Fibro (it is really bad it has taken so much from me and changed my life), Anxiety, Depression from it all, & Hypothyroid.
01-05-2010, 02:54 AM #11
Aches and Pains
I believe that IC is a kind of an auto-immune disease similar to lupus where the body attacks itself. I mainly believe this because I have hashimoto's thyroiditis where the body attacks and destroys the thyroid gland, fibromyalgia, chronic fatigue syndrome, blood sugar issues, meniere's disease, and various other disorders. Odd thing is, I got IC first and then all the rest followed. I believe the IC was the beginning of the total body system breakdown.
01-05-2010, 05:42 AM #12
All of this makes so much sense! I've had strange muscle aches, periods of numbness, etc for years - even before I had IC. Since the 2 can be interrelated I am really wondering if I have undiagnosed fibro myself. Definitely something to bring up next time I see my uro. Thanks to all for the great info!:woohoo:
Diagnosed w/ IC August 2007
Fibromyalgia - diagnosed February 2010
IBS since I was a teenager
Plantar Fascitis in both heels
bladder instills when needed (heparin and lidocaine only)
Detrol LA QD
Vicodin PRN (when needed)
Topamax 100 mg QD
Cymbalta 60 mg QD
Robaxin 500 mg BID
Calcium, Magnesium, COQ10, Manganese, Aspirin, B12, B1, Vit D, DLPA, folic acid (all for fibro)
diet, physical therapy, IF unit, lots of heating pads, puppy therapy
06-30-2010, 09:22 PM #13
I think your doctors wrong... I have all over body aches and I started having the really bad fatigue right around the time I was diagnosed...My doctor told me it was neuropathy and they dont know what causes it. and of course they ignore me when I tell them I am really tired all the time...grr... I know your frustrated.. I am too... HUGS!!W@@glie 1 :woohoo:
07-20-2010, 06:24 AM #14
I recently had a viral bout. They did blood tests and it showed reactivation of the herpes virus...the one that causes mono...ughhh... the Fibro pain was through the ceiling. I'ts been about 6 weeks and starting to simmer down but doesn't really go away.Mel
Frequent UTI's as a child,urethral stenosis by age 9, Urethral dilatations every 2 months. By age 20urethrotomy to remove scar tissue from dilatations.
Questionable endometriosis nightmare begins. First lap severed an artery. Lost lots of blood resulting in severe abdominal/pelvic adhesions. Needed 7 surgeries to clean up adhesions. Last adhesiolysis- 7/04 in Germany by adhesion expert using Spraygel. Finally adhesion free! Fibromylagia and chronic fatigue(from Parvo Virus infection 1997and Epstein Barr), migraines, IBS,IGG & IGA deficiencies, high IGM.Lots of food and envorionmental allergies.IC/PFD diagnosed after 4 endo surgeries and is now chronic daily pain.Still tryng to fine tune the diet and get on some sort of medication that I don't react too!
08-15-2010, 08:01 AM #15
- Join Date
- Feb 2010
- Cassino Italy
Thanks for all of these post. I am pretty sure I have fibromyalgia. I got the shingles about ten years ago and every since I have had a lot of tiredness and all over body pain like I have the flu or something. My skin on my back hurts if someone touches me. It feels like a sunburn and I have deep aches. I hate that others are suffering but its nice knowing that I wasnt crazy and that others have the same symptoms as me. There are days I cant stay awake and I am so weak. I think I could deal with the pain but the weakness and tiredness is really getting to me. I have had all the proper testing done by GYNOs and Urologist and other types of specialist but I still get anxiety of having something like cancer. I got IC ( radiation cystitis) from having cancer treatments 12 years ago so I do have a lot of anxiety about it. Doctors and nurses in the beginning treated me bad thinking I was a nervous person or an abused wife when all along I had radiation damage. I was diagnosed 1 year ago I am depressed because for 2 mths I felt great...my energy level was almost normal and just had a small amount of burning after I urinated but then I got a virus or something. I was vomiting and had fever and was delirious I vomited so hard that I urinated on myself...was so ashamed but my husband is an angel when it comes to taking care of me. Anyway that was 6 weeks ago and Ive been flaring and weak and tired every since I got that stupid virus. I miss feeling normal. I guess I am just ranting here but wanted to say thank you people for posting this so people like me know we are not alone with this. The tiredness and weakness is the worst for me. I cant believe how a bad bladder can cause so many issues.
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